Everybody Loves DW.

OK, you Sillies, in this post, I don't believe either I or Cherie Priest are advocating that you withhold sex as a manipulative tool to be used at your every whim. If you read the linked post and the linked article, and also here is a follow-up where Cherie talks more about her motivations for writing the article, you will see that there is a direct link between sex and the outcome some women might be trying to avoid. If you do not want to have any (more) children, yet your husband/partner does not take responsibility for, or 'refuses' to allow you to use birth control or be the master of your own domain as it were...then stop fucking him. You do have control over your life, so complaining about how you have so many children and you are so tired and your body is wearing down but he doesn't believe in birth control so whateryagonnado is stupid. You do have control. And if you don't, then it is time to call a domestic abuse shelter and get out...NOW!

I'm not suggesting that you withhold sex to manipulate you hubby to having to endure a Tupperware party on Superbowl Sunday or something...sheesh.

It is interesting how flames sometimes come more often on the inbox then on the comment thread.

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Completely unrelated to this, nobody wrote anything about D's pressure sore situation but I just wanted to explain something.

I use the term pressure sore or pressure ulcer or decubitis ulcer to describe what is going on with D's feet, and that is not entirely accurate. He actually has what are called stasis venous ulcers, which are not caused by pressure directly (but can be exacerbated by pressure.) Often, the cause of skin breakdown can be a combination of the two. A stasis ulcer is caused by severe edema and poor blood circulation from the lower extremities to the heart. The blood vessels in the legs and feet get so overloaded with un-oxygenated blood and fluid that they explode and die. This causes damage to the skin starting from beneath the surface of the skin. Often times, when the surface skin looks relatively healthy, the dermis layers beneath are rotting away. Then, a surface ulcer can appear almost instantly. It can be caused by a bump or a scratch or nothing at all. All of the sudden, you wake up and there is this huge opening of dead and rotting skin. There is not much warning and besides keeping your feet elevated above your heart several times a day, there is not a whole lot you can do to prevent it.

I wanted to explain this because pressure sores have such a stigma that it must have been caused by abuse or neglect. And often they are, especially in low staffed nursing homes that care for patients with dementia. There was an investigation done when D went in the hospital and I feel it is important that it was done. I was not insulted at all when I was questioned by hospital and home health staff. I was angry at two of D's family members that jumped to judgments about something they did not know anything about. (But these two family members have a lot of jumping to judgment type behavior. And mostly I find it hilarious and don't give it much thought beyond that.) However, this whole pressure sore deal is a big, big deal to be throwing accusations around because it could unfairly affect my career in the future if complaints were ever made official. I mean, there are certain things you just don't go around saying unless you are damned sure what you are talking about because your gossip could easily ruin a career or even a family. You don't  just go around and, for your own entertainment or whatever, accuse a teacher or a mother of hitting a kid, you don't accuse any man of sexually molesting anyone, and you don't accuse someone who works in the disability field of neglecting, abusing, emotionally manipulating vulnerable populations.

Several people, including my dad and some fellow home care workers have told me to just quit this situation and not put myself in the crosshairs of future crazyness. I know that they are right. I've talked to D about quiting attendant services altogether, and he always talks me out of it. Maybe I'm weak. I had planned not to quit when he hires someone else, just cut back by half, thus making it easier to transition to my own salary to make up for that. And I don't mind doing some attendant stuff. It's also good for him to have a backup or an emergency person. But I suppose I'd do that anyway, but the money makes it easier. Also, I'm a placeholder. If D doesn't use his hours, he loses them. So there is that. D is not oppossed to getting another attendant per se, he is just picky and procrastinates the process. It is hard to find someone to trust to come into your home and take care of your private business. So I understand that. Sometimes I think I'm too patient and part of the problem. But D says to quit to prove a point wouldn't work, because it isn't what is right for us and they would probably just knock me for quiting.

I try not to worry about it too much, because I know the truth is on my side and the evidence is there to support me. But even though I don't consider my CNA work for D a "real job," in a career type sense, I do take pride in one of my bestest skills. And that is in respecting the self-determination of people with disabilities while providing appropriate levels of support. It is a very fine line and I am quite good at it. It is especially important when dealing with people who have cognitive disabilities. D doesn't have any cognitive disability, yet he does take many medications and sometimes people may think that his decision making ability is compromised by this. I would say 99% of the time it is not, but there have been times when he has been too sick to make his own decisions and I have stepped in. I am his medical power of attorney as well, but I have never used that for any major medical decision. The reason D and I have gotten along for going on 12 years is because he respects my ability to treat him as a fully cognizant and functioning human being. He sometimes quite resents the fact that some family members (and others in the public) do not respect him enough to make his own decisions even if they don't agree.

The reason I got mad at him this summer regarding the foot thing was not because he made a mistake about when was the right time to call the nurse, but more because he lied to me about doing it. I do understand that he was trying to spare me the stress of it and also was in a bit of denial himself. I do realize now, though it took a few weeks to shake down what actually happened, that these venous stasis ulcers did come on quite suddenly for him.

I almost wish, for his sake, that I had been responsible for some pressure sores. If it was a matter of relieving pressure from certain areas of his body, they could have done that and these things could have possibly healed and future ones been prevented. As it is, stasis ulcers can heal, become reinfected, heal again, and the cycle continues. Because of the lack of oxygenated blood, it takes them forever to heal if at all, and they can quickly become bad again. D is working on getting a wheelchair that tilts so he can improve his circulation. But this is a large undertaking that will take some doing as far as medical insurance is concerned. It's not like you just pick one up at the drugstore.

So, it is a hard situation because you have to balance living your life and not worrying everyone all the time with the fact that this is a chronic problem. D tells his family that everything is going good and taken care of with his foot, and he is not lying. He is receiving the appropriate medical care, the wound does not seem to be infected right now. The two skin grafts are probably stage 2 wounds at this point, and the stasis one on his heel is probably a stage 3, which means it is not deep enough that it goes all the way through the dermis layers to bone. It is approximately 8 cm long and 4 cm wide. It may very well heal over time, or it may get worse. I'm writing all this because I know family reads this site and I want to give you as accurate picture as possible as to what is going on. There is nothing you can do, so don't worry. You have to teach yourself that. It is being taken care of, and it is not life threatening at this time.

Yes, I am worried that every time D goes into the hospital I'll be blamed now. And that is hard. But I know that people are going to choose to think what they want, and there is nothing I can do about it. I always want to ask them, what exactly do you think is in this for me? I've supposedly somehow manipulated a poor quadriplegic SSI recipient into being the father of my children (he pays no child support) and then I cause him to get a pressure sore? Wow, if I am that manipulative, I'm really dumb about it, no? You'd think I'd use my skills more to my advantage. What are my purposes, here?

When people accuse you of manipulating a situation, it is usually because they do not have the skills/courage/confidence/whatever to be direct in their own lives and take care of their own selves, so they manipulate others and expect that everyone else does the same. I'm almost about as WYSIWYG as they come. I am direct as direct can be. I'll come right out and tell you what I want and what I'm doing. I'm also pretty good about saying, if you don't like it, disengage. I'm all for win/win or no deal as they say.

Here are my motives and what I know in regards to D:

• I want him to be as healthy as possible.
• To do this, I should not be his only attendant.
• Although there have been some extenuating circumstances regarding State Policies and death's of mothers and the like, for the most part, I have encouraged him to get another attendant, while putting in my share of hours.
• This has been our one bone of contention the last several years that many arguments boil down too.
• I will still help D attendant wise to the best of my abilities until this is settled. But I do expect that he manage his own health. This means, he has to let me know if he needs me to do something that will prevent his health from deteriorating.
• The only exception would be if he became mentally incapacitated, which he IS NOT!
• If I was not D's attendant and someone else could pick up a lot of the work, I could most likely make MORE MONEY doing something that little master's degree thing trained me for. Attendant work is not a career for me.
• Even if he gets another attendant, I will still be available for emergencies and the like, whether I get paid or not.
• I expect him to do his best in everything he does.
• I want him to be happy and fulfilled in life.
• It would be nice if that included me.
• I want him to experience everything he can when he can.
• This is basically where fathering my kids came in.
• He was the first to bring up fathering my kids.
• I knew he was going to be in their lives anyway.
• I wanted to give him an opportunity to be a father.
• I wanted to give my kids the opportunity to have him as a father.
• Although I would expect some form of child support if he were to ever get a good paying job, I'm really not counting on any.
• I would not make him pay child support at the detriment of his own health.
• We are not breaking the law by putting him on the birth certificate. The state knows through paperwork from my fertility doctor that the kids were from DI.
• I think D made the best decision for him in determining that ICSI was not an option for him, and therefore, he will probably never have biological children.
• If he decided to at some point go through ICSI, it will probably have to be with some other woman as my health does not incline me to be pregnant again. I would be fine with this, as long as he is still committed to his responsibilities with his first two children.
• Well, to be fair, the above situation would take some getting used to, but I'm not the type of person who gets jealous or would keep someone from doing what he really wants to do...so I'd have to learn to deal with it.
• He doesn't tell you a lot. He worries about your reactions. This causes problems and confusion.
• We love each other. What our love consists of or if it seems to you more like friendship or more like marriage is really no ones business. It is for us to determine.

That's pretty much it in a nutshell.

Comments

[cubbiegirl]

And really, if you love each other, that's all we need to know. To me it is obvious how much you love him and want the best for him.