So, Moms out there, especially those with, say, 6 month to 24 month-old kiddies; what is your schedule like? I'm needing to make some adjustments to ours. I'd like to get to the gym, I'd like the kids to be up earlier in the mornings. Does that mean I have to start a morning nap? I've never been able to get them to do two naps a day. But then I let them sleep till 9 most days. But then when we have to get up early for something (like me teaching at the early church service, it seems to make our day a living hell. I'd like to get them to some kind of outing (like a playgroup) about once a week. I'd like me to get to the gym about 3 times a week. I'd like to add a morning snack for them. I'd still like to keep some of our 'school' time together. My dad is gone now until summer so I also have to factor in more housework and lawn mowing, and D has another couple of months of healing to go, so I can't factor in car transportation at all, but can factor in going back to work for him soon. There are enough hours in the day to do all of this, I think, but it is a matter of working around the kid's six mealtimes and one or two naptimes. It means I get to work in these little one to two hour chunks. What are your days like? It is just a matter of figuring out a schedule that keeps the kids in some kind of routine that is at least semi consistent from day to day.
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It looks like D will be coming home in the next week or so. Probably by the end of March for sure. So, I'm back to work, which is good because I not only missed 2 and a half months of salary, but I didn't get a SSDI check for March either.
(Side story: Get this. SSA says that in December, I accidentally received almost $8000 in mistaken over-payments. If that happened, you would have seen me jumping in confused joy back in December. Did you see that? No? That's because it didn't happen. I gave them my bank statement showing NO $8000 deposit as I get auto deposits. But it is very hard to prove a negative. So out of nowhere, they wrote me a letter with no explanation telling me that they were not going to pay me for the next 8 months in order to get that overpayment back. After several phone calls, I was told the information above, and I had to file an official appeal. Then, they said they weren't going to withhold my checks until the appeal was decided, but I still never got a March check. Now, they said it came on March 6th, but it didn't. So that is a whole nother thing that I have to decide whether I want to pursue. I'd have to file another appeal. Apparently, due process costs me a lot of money. Then, I wait like two or more years for an appeal date with a judge who works for social security, and then they'll decide to take $8000 away from me then, but at least that way, I can be expecting it and save up for it. That is the way these things work, folks. I've been here before. SSA accounting mistakes can only be postponed, not corrected.)
But after worrying about a roof over our heads, and food, clothing and health care for all of us, I don't worry about money. There is no point to it. It is too unpredictable and out of my control to pay much attention to it.
So, I've been given the go ahead to start the hiring process for a new attendant for D, which you may remember that I started before D went in the hospital and then postponed. Now I'm back on it. This will also cut my check, but I'm a realist and know that this is what is best for D and I in the future. Right now, I will still be probably putting in the same hours I always have even with an additional person while he recovers, but eventually I will have more time to pursue other ways for me to make money, I hope.
Here is a sad conversation I had with D yesterday. Things like this break my heart in a way I never expected before having kids. I've stayed politely out of the way of D's visits with his family members and have only asked D about the visits in sort of 'matter of courtesy" polite and general terms. I'm glad that he has had them to visit and for them to bring him some meals. They've been bringing in old photo albums and sharing old stories with him about their lives before him (he came along after 4 other children when his parents were in their 40's, so there was a long family life before him.) So he's been telling me a bit about that and that's all good and fine.
But then I off-handedly asked him if he showed the pictures of Naim and the IV pole from his cell phone, since there was all this picture sharing, and he answered "No, I can't talk about those kind of things." (and here we go, paraphrased to the best of my memory.)
Me: What kind of things?
D: Anything about my life. The kids, anything about me, my family and you.
Me: Like at all? Not even Naim walking with an IV pole? That's rather innocent and noncontroversial isn't it?
D: Anything about the kids. Anything. I don't know. It is really awkward. I just go along with whatever they talk about and just go with it. It is kind of a don't ask don't tell thing. Its just very weird. They don't ask anything. If I bring it up, they change the subject. Its very weird. I just go with it.
Me: (I've heard this kind of thing for years off and on, and I've always said the same thing.) You know, you can say, "I want to talk about X." I mean they are supposed to be there for you, right? They are visiting you to give you support? At least part of the time you should be able to talk about what you want to.
D: No, I can't. I'm just feeling very vulnerable right now. I'm sick and just laying here. I know I'm going to need help when I get out. I can't make them mad. I have to talk about what they want. I'm just feeling vulnerable around them.
Me: (Had this conversation many times.) So you still think they will withdraw support if you say something they don't want to hear?
D: Well, they did it to you. They've done it to [other siblings], so , yeah. It is always a fear if I bring up anything controversial with them, which is basically anything except talking about their stuff. And my butt, of course. That's the only thing they acknowledge I have going on right now, is my butt.
Now, I will tell you that in my opinion, I honestly don't think that D's father will withdraw support or end a relationship if D says something that he doesn't agree with or is uncomfortable talking about. And D's father is the one giving the most consistent and concrete support. However, I think it is a legitimate concern with some of the other family members. And I think the deal is, if the other family members withdraw support, it makes it very difficult on D's father and D doesn't want that. So it's ridiculous on many levels. And very sad for a lot of reasons, but mostly because D is cut off right now from much of the real acts of being a father. I have only been able to get the kids there about once or twice a week, and then only for about 30 minutes or so. Since he is stuck in bed in a very small space with lots of things the kids can't touch, there is only so much they can do there before they start going batty. So, D needs to feel like he is a father to them by BEING a dad, talking about dad things, being recognized as a dad, if he's not so much doing the dad things right now. I talk to him for a couple of hours every day, and a HUGE part of our conversations is him asking me about every little thing the kids do all day long. He really enjoys talking about them and hearing about them. To have to cut that aspect (and some others) out of his daily visits from his family is really quite cruel. He says that unless he is talking about how well his butt is doing and how his health is improving, they don't want to hear anything else. Even talking about going back to school and to work, its like they just get worried that any sort of overexertion will be too much for him. He says they put the burden of their worry on him, and make like it is his job make them feel better by only talking in references as to stuff himself in bubble wrap and have no life just so they won't have to worry.
The other thing that is very sad is that the idea to me that my little cute angel of a Naim and an Aaron are taboo and off limits to anyone. Amazing. So cruel to them, and they don't even know it. But someday, unfortunately, they will figure it out.
I'll interject here that I'm using the word "they" here as a gross generalization. It isn't everyone. for what it's worth. But its enough of everyone to make the daily visits awkward for him.
Parent/child relationships are tricky as adults when they are dependent on each other for things. Since I'm living in my dad's house, we have our own struggles with this. My dad and I don't have the same power differential as D has to deal with. I am a renter, and I pay all the expenses that the house incurs except for the base value of the house, which my dad paid off mortgage free, with money he inherited from my mother's death. I pay utilities, property taxes, homeowners insurance, etc. He doesn't make any sort of profit from me. We go year to year as a "lease" term. I have to give notice if I move out, he has to give notice if he decides to sell at the end of the year. But when the house appreciates, I will not benefit from its sale. If he dies, the value of the house counts with the entire estate and that is divided between my sister and I, so I'm not guaranteed this house forever. It is about the same as me leasing an apartment, like I did before, but with more square footage. He could not afford this second home if I didn't pay the expenses, and I couldn't afford to rent a house like this if he took a market value profit. So it is kind of a mutually beneficial deal. But that doesn't mean he doesn't occasionally pull the "this is my house so you'll do as I say" crap. The difference is, I don't let him get away with it. I call him on it. I mean, certain things, I have to defer to him. I would not make any major changes to the house without his permission. Last year, D ran his wheelchair right into a door and made a hole clean through it, and I had to face the consequences of that and pay for repairs, but in other areas, I insist that we are roommates and have to negotiate as such. TV schedules have to be compromised on. Child care and house work have to be agreed on. It is tough because there is still that father/daughter dynamic, and it is a constant bit of energy that I need to keep up in order to not feel like I'm 12 years old living with daddy. And sometimes he doesn't listen to me until I tell him things 6 times. Sometimes I feel like I have to start over every time he comes out here. The first few days are usually bad, until we sort of get into a groove with each other. But at least I can talk to him about things. At least I don't feel like I'll be kicked out if my kids make too much noise or if I have an opinion he doesn't agree with.
When I worked at 'big university" on "big, grant-funded projects about disability issues," a coworker of mine who has a spinal cord injury worked on a project dealing with abuse and disability. The project worked to broaden the policies about the definitions of caregiver/family abuse for disabled populations. There was the obvious stuff, like physical and sexual abuse, stealing money from the disabled person, neglect, things like that. But then they found thousands of people that were being abused in these subtle ways. Things like changing the person's medication without permission, or withholding it or food or care unless the disabled person acted a certain way that the caregiver/family member wanted them to act. All these disabled people said over and over again in this research that they couldn't express opinions, make choices, take calculated risks in their lives, have freedom of speech, religion, etc. for fear that the caregiver would take away support. People couldn't get their caregivers to purchase certain political books or magazines that they didn't agree with, couldn't get them to help them into a certain church they didn't agree with, couldn't get their caregivers to just listen to their choices and decisions regarding food, household organization, hygiene preferences, any and every little choice that you make everyday in your life, many people complained that their caregivers didn't honor those choices and directives. In Oregon, these types of situations can now be prosecuted as caregiver abuse. Many other states are also making policy changed to reflect this type of emotional abuse and are realizing the subtle ways that caregivers and family members use their power over vulnerable populations in this way.
Now obviously there is a lot of room for subjectiveness in these laws and most of these claims are taken on a case by case basis. This also does not mean that a caregiver just has to put up with whatever a disabled client throws at them. What it does mean, is that support has to be negotiated up front. If you don't want to work for a client that smokes, you say that up front. You don't bitch and moan every time the client lights up and threaten to leave the guy high and dry and walk off the job if you catch him with one more cigarette. Nor can you hide the cigarettes out of his reach or refuse to purchase them. If something comes up that you disagree with to the point that you no longer want to give support, then you have to give fair warning and notice and also assist in finding a suitable replacement. The only exceptions for walking off the job or refusing care would be if you felt you or the client were in danger. But threatening to walk off the job or withhold care in a blackmail-ish type way because of the client's behavior or opinions is emotional abuse.
I'm not saying that what is going on with D would be considered a prosecutable abuse offense. I bet that the in-laws don't see this as something that they are intentionally making him feel. And who knows (cuz they never TALK ABOUT IT) how much of this is in D's head and how much of it is reality. He sees that they withdrew support from me, and they did to some extent, but I see it more as I withdrew from receiving support from them, because yes, it did appear to me to have a huge emotional price tag attached that I was no longer willing to pay. As I look back, the assistance I received was given on false pretenses. I thought for the most part, it was given voluntarily to make my life easier because I was going through a tough time. The assistance was given during a two year period in which I worked three jobs and saw D through a serious illness, and then the illness and death of my mother. I thought the assistance was given in the spirit in which you might bring food to someone after a funeral. You do it to show you care by attempting to make their life a little easier, not because you have so little faith in them that you think they won't eat without your help. It turns out, that I wasn't given the assistance out of care and concern to make my life easier, but out of some kind of warped obligation and complete lack of confidence that I could handle my life (and more importantly, D's life) with any sort of success. It was not given out of love but out of fear that I would screw up (D's) life. They used us and our needs for their own purposes, and then made it right in their minds by showing so little faith in our own abilities to set themselves up as martyrs to friends and others by taking us on as their burdens. The difference between me and D is, I had ample opportunities to make my own way and negotiate my own help with others on fair terms, and this was just an unfortunate isolated incidence for me. A colossal misunderstanding as to what was going down on my part. And it was fairly easy for me to just not accept the help anymore and find other ways to get things done. But sad, too, because it seemed that my ability to go off on my own was so threatening that they no longer wanted to have a relationship with me. (Oh, and also because I'm bitchy.) They only wanted to deal with me when I was percieved as the powerless one in need of their charity. It is a bit more complicated for D, because for one, he just needs more 'man-hours' of assistance than I do. I think that when you do need a lot of man-hours of assistance than you should try to reciprocate as much as possible, but if it is impossible to reciprocate in a truly equitable fashion, then you have the right to expect that people should respect you enough to knowingly volunteer their services without manipulative strings attached. For D, he's never had a chance to gain enough faith and confidence in himself and his abilities to find and negotiate reciprocal and committed and fair voluntary support from a variety of sources. He has never gained that faith in himself because he's lived with forever what I just had a small two year taste of. And believe me, it is not a desirable situation to be stuffed by someone else in their pretend box of your incompetence and limitations.
So, I don't know what the deal is for sure, and how the best way is for D to come to terms with this. I think that part of it is that he needs to rise above his family's perceptions of him and be who he is and own his own stuff, good and bad. I just try to keep encouraging him to be true to himself and say what he feels and let the chips fall where they are going to. He doesn't quite trust this yet, but there are other ways to get what he needs that have nothing to do with family. I always have a plan B, C, and D.
But this is what I want to say about this, because it is a gray, murky issue. If you are ever in a situation where you hold the physical, emotional, and/or financial power in a relationship, you have to first admit that power and recognize it. Obviously if you are a parent, you know this type of control and you know how easy it would be to use the power for less than loving purposes. If you want your child to sit still at dinner, you can either work with him in nonviolent ways by setting limits and consequences for his behavior, or you could physically restrain him to the chair or physically abuse him if he disobeyed. You (hopefully) make a choice not to use your physical power over him inappropriately. As he grows older, you also have to find ways to relinquish your emotional and financial power over him by purposefully giving him the tools and freedom to become his own person. If you are in a relationship where you are the main breadwinner, or you are the larger, more physically powerful person,you have to come to terms with that power and not use it against the other person inappropriately. You and the person you hold that power over have to fess up to it and be willing to discuss it in terms that are nonthreatening and show that neither of you is going to intentionally use that power in an unfair way. Second, you have to learn to ask yourself at every opportunity if you are using it in anyway to your advantage. I am talking about looking at everything you do on a daily basis. This means getting into the habit of looking at that relationship in a way where you purposefully give up power.
Here is an example. My sister was always getting on my mom's ass about stuff she bought, how she decorated the house, how she used her money, things like that. My sister is very opinionated (Even more than me, if you can believe it.) and she's also a tight ass CPA (if you've ever known the type). When my mom was healthy, independent, and could make her own decisions, I didn't worry about it. My mom listened to her sometimes, and other times would not listen to her and do whatever the hell she wanted. She had that power. Then, when my mother got sick, my sister still was very opinionated about what my mother should be doing. It was still things like the clothes my mother bought, what she wanted from the grocery store, and then more important things like which medications she should be taking. My sister's behavior didn't change, but the power differential did. My sister became my mother's primary caregiver, and my mother could no longer drive and shop for herself, make her own food, walk, go off and do what she wanted despite what my sister thought. She was at the mercy of my sister's opinions. I had tried to make my sister understand that she had to give up power because my mother didn't have the same power and the power differential was putting my mother in a vulnerable and fearful position. My sister would blame it on the brain tumor, but my mother became fearful of my sister in a way that I recognized, because I have been in that fearful, vulnerable position with her before, and I have no brain tumor. I don't think my sister intended to strike fear in my mother's heart, but she did. Because she did not recognize that she needed to actively give up power and control in order for my mother to feel safe. And no, this doesn't mean that she should have let my mother go out and impulse buy a PT Cruiser (my mom became very suggestive to advertising near the end of her life), but maybe this means that you let her buy the expensive Dove bars instead of the cheaper ice cream sandwiches, yes? It is a fine line, but what it requires most is thought and sensitivity.
I'll note here that all these same rules apply if a person has a cognitive disability and part of your job is to support the person's decision making process. It is much harder to find that balance and takes a lot of up front negotiation. I think it takes specific training and skills to work with clients with cognitive disabilities in a way that helps them with decision making while still respecting their self-determination, but it can be done. I've seen it done, and done well, many times.
So, I'm sorry D feels this way and has felt this way for years about his family. I've only been able to look at my own self, and tried to modify my behavior by actively giving up power and control to him, even if that means I apparently and semi-unknowingly watched while he let his foot get chopped off. When I work for him, I'm working for him and he is my boss. We have agreed upon parameters for my work, and he tells me what to do. I may have a suggestion here or there, but the final decision is up to him. And as much as humanly possible, I keep whatever is going on in our personal lives out of the time when I am working for him. I'm not always perfect at this, because our lives intertwine so much, which is why I've always been very supportive of other attendants coming in. But we always try to be open about it and talk about it. If he feels that I'm letting personal issues get in the way of the job I've agreed to do, he lets me know.
It is very hard to have a personal, familial relationship with someone you are providing long-term care to. That is why I feel it is so important to also have a straight up employee, someone you can boss around and have strictly professional boundaries with. (This is another reason why nursing home situations are often abusive. The patient has no power over his own care, a corporation does.) A deaf-blind woman I met once who had her own electrician business told me that she needs both family and professional caregivers. The caregivers show up on time and do what they are told and don't bullshit around, they can be fired. But the family was there for 3:00 am emergencies and she couldn't expect that of her hired help. I think this is ideal. But, if family members cannot recognize the power differential and actively set aside personal issues when it comes to providing support, then they shouldn't be providing support at all. It is a hard thing to find a balance with, but a situation where a quadriplegic is afraid to talk about his children for fear of repercussions resulting in abandonment of care is just rather tragic.
UPDATE: A very nice person who asked not to be identified sent me several links on emotional abuse from various sources such as the APA. She sent me several links defining emotional abuse such as this excerpt below (via), which she asked me to share with D. So, I have shared with D, and now will share with y'all. Knowledge is Power, baby.
Aggressive abuse can also take a more indirect form and may even be disguised and "helping." Criticizing, advising, offering solutions, analyzing, proving, and questioning another person may be a sincere attempt to help. In some instances however, these behaviors may be an attempt to belittle, control, or demean rather than help. The underlying judgmental "I know best" tone the abuser takes in these situations is inappropriate and creates unequal footing in peer relationships.
- Invalidating seeks to distort or undermine the recipient's perceptions of their world. Invalidating occurs when the abuser refuses or fails to acknowledge reality. For example, if the recipient confronts the abuser about an incident of name calling, the abuser may insist, "I never said that," "I don't know what you're talking about," etc.
- Withholding is another form of denying, Withholding includes refusing to listen, refusing to communicate, and emotionally withdrawing as punishment. This is sometimes called the "silent treatment."
- Countering occurs when the abuser views the recipient as an extension of themselves and denies any viewpoints or feelings which differ from their own.
- Minimizing is a less extreme form of denial. When minimizing, the abuser may not deny that a particular event occurred, but they question the recipient's emotional experience or reaction to an event. Statements such as "You're too sensitive," "You're exaggerating," or "You're blowing this out of proportion" all suggest that the recipient's emotions and perceptions are faulty and not be trusted.
- Trivializing, which occurs when the abuser suggests that what you have done or communicated is inconsequential or unimportant, is a more subtle form of minimizing.
Denying and minimizing can be particularly damaging. In addition to lowering self-esteem and creating conflict, the invalidation of reality, feelings, and experiences can eventually lead you to question and mistrust your own perceptions and emotional experience.
Okay, when I look at these definitions, I can say that we ALL probably have done some of these things sometimes to others in our lives. Hopefully we monitor ourselves enough to catch ourselves and correct our behavior and make amends before it goes on too long. I think it becomes emotionally abusive when a) it is a chronic, long term pattern of behavior; b) there is a power differential as I've discussed above; and c) the abuser never checks their behavior, admits to wrongdoing, or gives the abusee any sort of recourse to discuss how the abuse is affecting them.
I can relate to D's predicament. As you may remember, I'm a high level quadriplegic. I have been working with paid attendants since 1997, and I have had my share of problems, most of which I have allowed to occur myself.
My problem is that I have a dreadful fear of confrontation, which is compounded by my physical vulnerability. If I don't watch myself, I can allow a caregiver to reach an unreasonable upper hand. At one point, I had a live-in attendant who for whatever reason was a control freak. Once I allowed him to step over the line with a totally unreasonable request, his control over me snowballed to the point where I found myself in a psychologically abusive situation. After I had had enough, I came to the conclusion that the only way that I could get rid of him without a long and arduous, not to mention uncomfortable, confrontational situation, I opted for having him physically removed from the premises by uniformed police officers. What a relief that was, and what an eye-opener of an experience it had been.
I still have my fear of confrontation, but I will never let an attendant abuse me to that extent again. I have to remember that I'm the boss, and if someone is not meeting my requirements that I can let them know that they have a choice of changing or leaving.
Luckily, I'm blessed with an understanding family who would never put me through psychological hoops. It must be tough for D. I empathize with him. I hope things get better.
Posted by: John Ivey | March 20, 2006 at 06:42 PM
I feel for D not being able to talk about the boys. My dad can't talk about me, Cole or Nat with his family (mother and sister). They change the subject too and pretend he didn't say anything. And he's such a proud first-time grandfather, and he just wants to show them how cute her pictures are or whatever and they act like it's terrible that she exists.
He's afraid his mother will disinherit him for having a lesbian daughter and a Black grandchild. And she might. She's evil that way.
Posted by: shannon | March 27, 2006 at 12:50 PM