I really like living by myself. There are a lot of advantages, not the least of which is being able to set my own agenda every day and not needing to adjust myself to anybody else.
I play classical music as loudly as I want any time of the day or night. I burn incense pretty constantly and a lot of people don't like incense. I eat when and what I want to without having to be concerned with what someone else might want to do. If I want to take the day off and just rest, read, and listen to music, there's no one here to ask me what's wrong and insist on reassurance that I'm okay.
If I don't want to wash my hair, I don't and there's no one to remark that my hair could use a washing. I wear whatever I want without concern about modesty or fashion. Since I have limited energy but I like an uncluttered environment, it's a blessing that my environment stays the way I want it unless I mess it up because there's no one else to pick up after.
Right now there are books on every inch of my bedroom floor except for a pathway to the bathroom and the closet. I have been in the process of sorting books for many days. I have hundreds of books and I keep acquiring more. I refuse to buy another bookcase so it's time to clear them out. That requires some re-reading of books to see if they will make the cut. Thanks to low energy and re-reading, this project is going to take weeks. If someone else were living here, I would have to explain why there are piles of books everywhere.
I talk to myself a lot. I used to only do this in the car because the people I lived with would have thought I was crazy. Talking to myself is a habit I developed as a child when I was an only child and frequently alone. There's something kind of magical about hearing myself talk out a problem or making a decision. It's like hearing another person, and since I often think I know what other people should do, listening to myself really speeds up my ability to make decisions!
I know some of my habits would get on someone else's nerves and vice versa. For example, one of my regular houseguests is a little creeped out by the knife that frequently sits on the top of the peanut butter jar. I use it to dig out a bit of peanut butter when I pass by. (Probably contributes to my overweight.) But when someone else besides me washes the dishes, the knife has to be wiped off before putting it in the dishwasher. Peanut butter is gooey and sticky. So, in order to be considerate, I try to remember to clean off the knife and put it in the dishwasher myself.
My sleep patterns are pretty messed up and have been all my life. I've tried pretty much everything to straighten them out, and some of the things I've tried have helped a lot. At the same time, I am usually awake for a period of time around 4:00 in the morning. I blame all the years I got up with restless children, but who knows why the pattern still persists. So I get up and eat something (peanut butter). I read. I clean out closets. I write blog posts. I read stuff online. Finally I go back to bed and watch television. All that activity would be very aggrevating to another person living in the house. My dear husband slept with ear plugs and an eye mask. The other problem is that when I go back to sleep I sleep past normal getting up time. So I may appear to be sleeping very late unnecessarily which tends to make people think I'm lazy and irritate them.
I like to spend about an hour every morning reading my meditation books and journaling. Being free from a 9 to 5 job, has given me this luxury. Then I've been slowly developing the habit of doing 20 minutes of meditation at around 5 or 6. These two opportunities to connect with myself and a force for good in the universe keep me pretty grounded mentally and emotionally, but they interrupt interactions with anyone who is living with me and require special requests for no interruptions. Since I love to gab and interact, I don't really want to ask.
Being alone a lot of the time gives me the opportunity to more easily notice my thoughts, emotions and behavior. There's really no one else to blame when something goes wrong. It's always me; me every time! That fact gives me the opportunity to notice and work on correcting my thoughts before they become emotions and behavior that are negative.
On the other hand - I love having company. I seem to be both a very social and very reclusive person at the same time. Weird. Plus being a little bit old and a little bit disabled, makes me more vulnerable so having someone here is good for my safety.
I am not at all fearful for myself - I keep my cell phone close by so if I fall down, I've got a way to call for help. Plus I'm probably a little bit more muscular and balanced than a lot of old ladies because of 20 years of yoga and weight lifting. I also have had great nutrition now and in my earlier life which means I do not have brittle bones. In addition, I'm not very fearful of intruders because I have wasp spray, an aluminum baseball bat and my bad temper for protection.
Nevertheless, I probably am safer when other people are here. So, all in all, I like living alone and I like company. I think I'm blessed to love both!
Wednesday, January 30, 2013
Sunday, January 20, 2013
Caring for the Ones Who Take Care
My youngest children with disabilities both turned 41 this year. They came to me through the foster care system when they were just babies and because of their disabilities were never adopted. So they have been in my life a long, long time.
It turns out that our world does not really want to spend tax money to take care of severely disabled people, regards them as less than human and would prefer to have them permanently out of sight (which is some cases means dead). This attitude probably comes from the eugenics movement in the early part of the 20th century when there was a belief that people with severe disabilities were the cause of all society's ills and if they were eliminated or locked up, the problems would be solved. So, I have had to fight all kinds of people and systems in order for them to have any kind of life and many times the fights were about life and death. But we've made it this far.
My own belief is that if we as a society are not going to own up to wanting people with disabilities dead and are going to let them live, then we have an obligation to help them have a decent life since as human beings they actually do have many of the same wishes as other humans. I'm not talking about the lap of luxury here but I am talking about a decent place to live, reasonable health care, decent food and clothing, friends and family that care about them, and interesting, productive things to do all day. I believe they should be treated with kindness and understanding.
Both of them live in group homes with roommates and have care staff with them all the time. My son has a part time job at a recycling center and my daughter is a volunteer paper shredder at a local non-profit. For the most part they have pretty good lives. However ever since they've had paid caregivers, I've had problems with the caregivers. Some of the problems were relatively minor - things disappearing from the house, my daughter being dressed in inappropriate clothing, teeth needing to be brushed and so forth. Some of the problems were very serious - injuries, verbal and physical abuse, important doctor appointments missed.
Over time I became aware that the agencies that serve folks like my son and daughter have an awful time finding people to be caregivers. It's not a popular job at all. Plus it pays very, very little and often has no benefits. So the agencies overlook even serious problems if caregivers come to work every day and have some kind of explanation or excuse for the problems. There are also big financial consequences for the agency if they have to let someone go - the agency pays the new person for their time while they're being trained but the agency is not reimbursed for this expense. Plus the agency has to pay another staff to work the shifts vacated by the person they let go - usually this means overtime which they are also not being reimbursed for.
I was very angry for a long time about the poor care my son and daughter seemed to be getting. I blamed the care staff and the agency. A little at a time I tried to open my mind so I could understand what was happening. First of all, I learned what the agencies were up against. Then I took the training that was provided for care staff and learned that it was good training in the philosophy of community living but provided very little in how to care for a person with disabilities on a daily basis.
In the last couple of years I've learned a lot more. I've tried to get to know the people working with my son and daughter. Most of them come from a "poverty culture" which I have had the opportunity to learn about having come across a book on the subject. Many of the things I criticized the care staff for came from the culture they grew up in and that they still live in since most of them are paid $7.40 and hour - not enough to live on. Many of them are uneducated and have many, many family troubles. They are fearful outside of their own neighborhoods and so have a lot of trouble finding any place outside their neighborhoods. The way the dress and eat are very different from what the rest of us do so how they dress and feed my son and daughter reflects their own lives.
I finally decided that what would help the most in getting good care for my son and daughter was to care as much about the well-being of the care staff as I do for my son and daughter. What the care staff lack most is money. So I've been fundraising for a couple of years and I've been able to give them small amounts of cash from time to time. I had a birthday party for myself when I turned 70 and asked people to bring money for what I call the "Integrity Fund" instead of presents. I've had a garage sale. I have a friend that donates her designer clothes which I take to a resale place. When they sell I donate the $ to the Integrity Fund. Sometimes that little bit of cash enables one of the care staff to get gifts for her kids at Christmas or go to the dentist to get an abscessed tooth taken care of.
I actually have seen a difference in the attitudes of the care staff since I've been trying to care about their well-being. They're more friendly to me, of course, but also much more willing to accept my input about care. My next step is to find out what resources are available to them as "working poor." I'm pretty sure there are places that will take care of dental needs, etc. On the other hand, figuring out a way to present this information is going to be tricky because they're proud and don't want to accept "welfare."
At this stage in my life as a long time "do-gooder," I'm thinking that caring for the those who care for my son and daughter is an excellent way to spend my last years. I'm not likely to solve the problem before I check out. The problems have been around for a century or more and are deeply ingrained, so I will be satisfied if I can make a small dent.
It turns out that our world does not really want to spend tax money to take care of severely disabled people, regards them as less than human and would prefer to have them permanently out of sight (which is some cases means dead). This attitude probably comes from the eugenics movement in the early part of the 20th century when there was a belief that people with severe disabilities were the cause of all society's ills and if they were eliminated or locked up, the problems would be solved. So, I have had to fight all kinds of people and systems in order for them to have any kind of life and many times the fights were about life and death. But we've made it this far.
My own belief is that if we as a society are not going to own up to wanting people with disabilities dead and are going to let them live, then we have an obligation to help them have a decent life since as human beings they actually do have many of the same wishes as other humans. I'm not talking about the lap of luxury here but I am talking about a decent place to live, reasonable health care, decent food and clothing, friends and family that care about them, and interesting, productive things to do all day. I believe they should be treated with kindness and understanding.
Both of them live in group homes with roommates and have care staff with them all the time. My son has a part time job at a recycling center and my daughter is a volunteer paper shredder at a local non-profit. For the most part they have pretty good lives. However ever since they've had paid caregivers, I've had problems with the caregivers. Some of the problems were relatively minor - things disappearing from the house, my daughter being dressed in inappropriate clothing, teeth needing to be brushed and so forth. Some of the problems were very serious - injuries, verbal and physical abuse, important doctor appointments missed.
Over time I became aware that the agencies that serve folks like my son and daughter have an awful time finding people to be caregivers. It's not a popular job at all. Plus it pays very, very little and often has no benefits. So the agencies overlook even serious problems if caregivers come to work every day and have some kind of explanation or excuse for the problems. There are also big financial consequences for the agency if they have to let someone go - the agency pays the new person for their time while they're being trained but the agency is not reimbursed for this expense. Plus the agency has to pay another staff to work the shifts vacated by the person they let go - usually this means overtime which they are also not being reimbursed for.
I was very angry for a long time about the poor care my son and daughter seemed to be getting. I blamed the care staff and the agency. A little at a time I tried to open my mind so I could understand what was happening. First of all, I learned what the agencies were up against. Then I took the training that was provided for care staff and learned that it was good training in the philosophy of community living but provided very little in how to care for a person with disabilities on a daily basis.
In the last couple of years I've learned a lot more. I've tried to get to know the people working with my son and daughter. Most of them come from a "poverty culture" which I have had the opportunity to learn about having come across a book on the subject. Many of the things I criticized the care staff for came from the culture they grew up in and that they still live in since most of them are paid $7.40 and hour - not enough to live on. Many of them are uneducated and have many, many family troubles. They are fearful outside of their own neighborhoods and so have a lot of trouble finding any place outside their neighborhoods. The way the dress and eat are very different from what the rest of us do so how they dress and feed my son and daughter reflects their own lives.
I finally decided that what would help the most in getting good care for my son and daughter was to care as much about the well-being of the care staff as I do for my son and daughter. What the care staff lack most is money. So I've been fundraising for a couple of years and I've been able to give them small amounts of cash from time to time. I had a birthday party for myself when I turned 70 and asked people to bring money for what I call the "Integrity Fund" instead of presents. I've had a garage sale. I have a friend that donates her designer clothes which I take to a resale place. When they sell I donate the $ to the Integrity Fund. Sometimes that little bit of cash enables one of the care staff to get gifts for her kids at Christmas or go to the dentist to get an abscessed tooth taken care of.
I actually have seen a difference in the attitudes of the care staff since I've been trying to care about their well-being. They're more friendly to me, of course, but also much more willing to accept my input about care. My next step is to find out what resources are available to them as "working poor." I'm pretty sure there are places that will take care of dental needs, etc. On the other hand, figuring out a way to present this information is going to be tricky because they're proud and don't want to accept "welfare."
At this stage in my life as a long time "do-gooder," I'm thinking that caring for the those who care for my son and daughter is an excellent way to spend my last years. I'm not likely to solve the problem before I check out. The problems have been around for a century or more and are deeply ingrained, so I will be satisfied if I can make a small dent.
Tuesday, January 08, 2013
Okay, Now I've Really Gone Over Some Kind of Line!
The day after Christmas I dreamed that I had decided to take my wheelchair to a nearby town to take care of some important business. It's about 20 miles away and I rolled that wheelchair all the way there instead of taking the car. Hmmm. I have no idea what that was about. But, of course, since I no longer need the wheelchair, as soon as I got there, I got out of it, leaving my back pack with my credit cards, money and cell phone in the chair.
When I finished my business and came back to wheel myself home, the chair and my back pack were gone. Of course I panicked. Then I suddenly remembered that I had all sorts of tools to solve problems and there was no reason to get upset. I got busy finding a ride home, borrowed a phone ansd cancelled my credit cards. I talked to myself in a soothing way and what had been a nightmare turned into just another dream.
When I woke up I thought, "I can't believe I've been using the tools of the program so long that I actually turned a nightmare around. That is really strange." I guess this means that the tools have finally sunk into my unconscious which is a good thing. On the other hand I feel a little like I'm now living on another planet.
When I finished my business and came back to wheel myself home, the chair and my back pack were gone. Of course I panicked. Then I suddenly remembered that I had all sorts of tools to solve problems and there was no reason to get upset. I got busy finding a ride home, borrowed a phone ansd cancelled my credit cards. I talked to myself in a soothing way and what had been a nightmare turned into just another dream.
When I woke up I thought, "I can't believe I've been using the tools of the program so long that I actually turned a nightmare around. That is really strange." I guess this means that the tools have finally sunk into my unconscious which is a good thing. On the other hand I feel a little like I'm now living on another planet.
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