The Edge of the Limit

Some days I want the world to stop. I want my world to change. I want a different life. I get tired of it all.

I get sick of taking care of someone else. I get sick of being responsible for for everything that needs to be done. I want it all to stop. I want to be normal.

I don't need a vacation. I don't need a break. I don't need a hug or a pat on the back. I need for it to end.

I don't need to leave my husband or shun him or think of him as a burden. I need for him to be normal. I need for us to have a normal marriage and life...just a normal day. I need for our lives to stop being controlled by a screwed up twist of fate that happened twenty-five years ago. I don't need it for my sake. I need it for his sake too. He's tired too. I know he wishes every moment to have one day like everyone else. One hour.

And I'm not going to get it. He's not going to get it. Not any of it. We are never going to be normal. We are never going to live spur-of-the-moment. We are never going to take weekend trips together or chase each other around the house or have a meal where one of us isn't shoveling food into the mouth of the other. I am never going to be free of it and neither is he. And we accept it. We understand it. But some days we just don't like it.

So there are days when I need to be frustrated. Days when I reach my saturation point where I can't take in any more. And I need to have the freedom to express that frustration and dissatisfaction. Do it without remorse. There are moments where I could scream and I want to punch the walls and tear my clothes and cut off all my hair as if within the span of a moment it would all grow back and bind together as though I lived in a cartoon world. That's how close to the edge I get.

I won't do it but I want the freedom to do it. I want that much control over the minutes that pass in my life.

Pat Yourself on the Back

I'm happy to report that after my meltdown on Monday I'm feeling quite a bit more confident about leaving B next week. I think I needed to get it out of my system and hear a little reassurance from B and others.

I'm not normally someone who worries. I try to live by the idea that a vast majority of things we worry about are either things that won't even happen or things that are completely out of our control and fretting will not make anything better. I also try to live by the idea that we shouldn't borrow trouble. If trouble is coming, it'll come on it's own. I have no need to set out the welcome mat and keep the door unlocked. Trouble comes with a battering ram and a bad attitude.

Thinking over the situation has helped. Not worrying but more or less analyzing what my concerns are and considering if they're valid. Yes, B could very well become sick or hurt but his doctor is available to us at all times - if he were sick enough she could be called at home if necessary. She'll be seeing him the day after I leave and B's dermatologist will see him a few days before I return home so if he's getting a sore it can be looked at easily. I will go over everything with my MIL to refresh her memory of how B's to be looked after. And it's her son. She's certainly not going to neglect him. If she didn't want to take care of him while I'm gone she'd have refused the job months ago when this trip was first considered.

And the comments y'all left? Wonderful. Not only are they kind and encouraging but they remind me that I really do need a vacation. I need some time where I don't have to be available to someone all the time. I need to visit with those I miss and sleep late and go to movies and get a manicure and go shopping and not be consumed with care giving. I love my life and I love to take care of B but I need to rejuvenate or I'm not going to be able to do my best job for him. Thank you all so much for saying exactly what I needed to hear.

So when I get on that plane in a week and I have butterflies in my stomach and a bit of anxiety about leaving B behind for a couple weeks I'm going to remember the words y'all wrote and it's going to help me settle down and be calm. Until the next bout of anxiety flares up, anyway.

You can try it but I don't think you can talk me down from the panic over the creepy airplane food and the crappy in-flight movie.

Dread Has Arrived

I knew it was coming. I knew that as the days before my trip grew shorter it would finally sink it that I'll be away from B for two and a half weeks. And it's not just one of those "I'll miss him so!" sort of things. I definitely will miss him but this time I'm more uncomfortable than ever leaving his care to someone else.

No one takes care of B like I do. I do it perfectly. As close to perfect as one can get anyway. I know how he needs to be turned, I know how his bathroom routine goes, I know how he should be shaved and how he likes his teeth to be brushed. I know how to sit him up correctly and how to arrange his pillows to support him when he's laying on his side.

B's mom will be taking care of him while I'm gone, with the assistance of Gerd, and she was the one who took care of him before I ever came along. I should have no worries at all but things are different now than when I first moved here. B's older and it's easier for him to become ill. And if things aren't done in a certain way he can become injured or get a pressure sore.

Last night as I lay down to sleep I could only think of B being lonesome without me. I could only think of his bathroom routines not being handled just right and him feeling miserable. I could only think of him being uncomfortable and sad and every other thing that could possibly go wrong and I began to panic. My heart beat faster and faster and my breathing became gasps and I started to cry. I couldn't bear the idea of being away from B for two and a half weeks. What was I thinking when I bought a plane ticket?

I couldn't stand it any longer so I grabbed my pillow and moved over to B and put my head up on the bed next to his head. I was waking him up but I was so sad that nothing but being as close to him as possible was going to comfort me.

In the light of day I could be calmer about the situation and I could think more clearly. I know he'll be fine. Probably. His mom will take good enough care of him. Not as well as I do it but it'll hold him for a few weeks. I know I can take this trip and not have a disaster occur but it doesn't stop me having nervous second thoughts. It doesn't damp down the anxiety and worry. Over the years I've become so attached to B and taking care of him that it's hard for me to stop.

Do you mothers go through this? I mean how do you send your kids to grandma's or summer camp if you have these thoughts?

I have to stop wigging out about this. Today I'd start to talk to B about how this anxious feeling is kicking in and I'd start to get weepy again. Me crying upsets him no end so he's doing all he can to reassure me and calm my fears.

It just going to have to be a leap of faith that I take.

Just Watch It, Fella

Let me start off by saying that I'm sure I'm making too much of this and I'm likely reading more into the situation than it warrants. But you know if I'm going to get carried away I may as well go for a long ride.

I'm starting to get to the point where I'm getting anxious about my trip and it's more than just the latest thwarted terror activity. I'm at the point where I get concerned about how B will be taken care of while I'm gone.

I've said before that I'm quite territorial and that territory extends to B's care. I'm in charge of it, I do virtually all of it and I take full responsibility for any good or bad results. Since I took over his care he's been very sick a couple times but the last time was six years ago and he hasn't had a pressure sore in nearly ten years. I do a very good job, if I do say so myself.

While I'm gone my MIL will take care of B. She was the one who cared for B before I ever came along but she also had the help of B's dad, who has since passed away, and she hasn't had to do it full time since the last time I went home for a visit three years ago. She's also getting older and that plays a part since taking care of B can be physically demanding. However Gerd, her gentleman friend, will be around to help her out. And luckily Gerd has care giving experience. His late wife had Parkinson's and later due to a Parkinson's induced fall she was a quadriplegic. And while everyone with a spinal cord injury is different it should all be at least somewhat familiar to him. I'm sure he's going to be a great help to my MIL while she takes care of B and this should all give me some peace of mind.

But there's one little niggling thing.

Tonight B's mom called us to check in and chat and she was talking about some mutual friends who came to visit her and Gerd and have supper tonight. She made a variety of salads and cheese soup for supper. In the background we could hear Gerd going on about how great this soup is and how much B would enjoy it, blah, blah, blah. Okay - except for the fact that B doesn't like cheese soups or sauces. He won't eat cream sauces. I couldn't get him to eat macaroni and cheese if it meant saving his life. He doesn't like any white sauces, with or without cheese, with the exception of Hollandaise.

B said "Oh I wouldn't like that soup." and Gerd asked why not. B replied that he doesn't like white sauces and Gerd replied "Well when your wife's gone your mom can cook some of that cheese soup and I'll make you eat it.". B and I looked at one another with expressions that said "Wrong answer.". I know Gerd was just kidding around. I mean I feel like I know he was anyway. But still, that statement grates on my nerves.

Those who are handicapped are dependent on those who care for them. They're completely vulnerable to their caregivers. We can exercise complete control over them. There's a bond of trust that's built between a caregiver and the person for whom they care and it's one that shouldn't be abused. I don't even like joking about its abuse. To say, even as a joke, that B will be made to do anything, especially eat something he finds repulsive, bothers me a lot.

But I have to let this irritation go, else I can't make this trip. If I can't trust someone to come into my precious territory and care for B for 2 1/2 weeks then I simply have to stay home. I have to have faith that my MIL can handle, with Gerd's help, taking care of B. I know that our family physician is available at any time should B become ill in any way and I could be back home in about 24 hours if there were an emergency. I have to know that my MIL will keep B's interests in mind and her loyalties will be first with her son. I have to have faith that B will be the strong, willful person he is now and won't allow himself to be pushed around or neglected or abused by anyone.

I like Gerd and all. I think he's a very nice man and he makes my MIL very happy. I think he would do all he could to take proper care of B. I have to have faith in it. And Gerd better have faith in the fact that if I find out he's put one foot wrong and has compromised B's trust or care in any way, I'll plant my foot up his ass so far he'll think Birkenstock started making hats.

When we hung up the phone tonight B said "Gerd says something like that to me again, I'm gonna tell him to roll me over and kiss my ass.". That's my guy. Don't go down without a fight.

It Gets Better

I dread getting B outside. Absolutely dread it. Dread it to the point of hating it.

Every para and quadriplegic is different in terms of their injuries and how it effects their physiology. Some paras and quads are such that they can't sit up for long periods of time, some have circulatory systems that aren't as affected by the weather, some have more mobility than others. B's physiology is such that he has very low tolerance for cold weather and that means we very, very rarely venture outdoors with him once the weather is below 6o°F. His physiology is also such that if it's too hot we can't go outdoors because he can't sweat and therefore his body can't cool itself like a normally healthy person can. This all means that when it's warm and sunny and pleasant we try to get him outside. Our windows of opportunity are small and every one we don't take advantage of is lost forever.

And yet I dread it. Bathing him alone takes me well over an hour of non-stop effort and afterwards there's no break because I've got to get him prepared to get outside. Dressing him is guaranteed to leave me a sweaty, annoyed mess. Pulling on his tight fitting anti-thrombosis stockings is the easy part - it's wrestling on his underpants and his trousers that I despise. All the tugging, yanking and rolling just to get him into pants is enough to make me cancel the whole trip. Once he's dressed and I have his shoes on I need to then move furniture to get his electric wheelchair into the living room. Once things have been rolled and dragged out of the way and I have the wheelchair next to his bed it's time for me and another person to lift his 1.90 meter, 75 kilos of passive weight body into the chair without hurting him, his bones - which after 24 years of paralysis are as brittle as kindling wood, or me.

Once it's accomplished I'm done in. My hair is generally drenched in sweat, any trace of makeup is long gone and all I want to do is pin a note to him saying "Dear Bartender, Please give him a beer and a straw. Money is in his shirt pocket. Send him home in one hour.". I have no interest any longer in going out and only wish to loll in front of the fan and have a nap.

But I don't. I screw a smile on my face and don't let on that I don't want to go out. It's his opportunity to get some fresh air and a change of scenery and a sense of freedom and independence and I can't stand in the way of that.

B gets out of the apartment, down the elevator and outside the front door and it's as if none of the rest of it even happened. The frustration and irritation and endless sweating is forgotten and we start down the street to see what we can see and generally end up parked outside of our favorite cafe with the owner coming out to greet us like we were celebrities.

Yesterday was such a day. By the time I got B in his chair I felt like death on a soda cracker and looked like 40 miles of bad road but I screwed on that smile and by the time we got down to the market square all the effort it took to get us that far was forgotten.

Just as the chimes in the city hall's clock tower chimed the tune it plays when five o' clock rolls around we got seated at our favorite cafe, our regular first round of drinks already on their way out to us. My MIL was there with her gentleman friend and B's dad's cousin was there with her husband and we all had the best time. The air was perfect - just the right temperature with little humidity - the food was delicious, the service fantastic. The market square was peaceful and even though we were in the middle of the city, it was quiet and calm.

After supper was finished and we were having our final drinks I leaned my head over on B's arm, perfectly content to be where I was. I had dreaded the whole thing but now that the hard part was over I was dreading to break up the wonderful feeling of being in a wonderful setting with my husband to head back home.

Save Me a Place

Last week while trying to stave off an enormous personal meltdown I told B that I was tired and burned out. I love him, I love my life and I love caring for him but I haven't had a full 24 hours off in nearly three years.

"Well, maybe you can take a weekend trip somewhere."

I don't want to take a weekend trip. Well, I do but it's not what I really want.

"Do you think I could go home this year?"

B knows how much I miss my family and how I really need to go see my mother before she begins to forget who I am. There's a lot to work out before I can leave but he was willing to take it on. Getting B to agree to this isn't the trick. It's getting my MIL to agree to it since she takes over caregiving duties when I'm gone.

Yesterday my MIL came over to visit. She came back from a two week trip to a spa in Poland on the Baltic Sea all refreshed and rested and I envied her. And I dreaded bringing up the idea of me leaving home for two weeks. About an hour into the visit B mentioned that I'd like to go home for a visit this fall and I cringed inside waiting for her answer. And true to form - because my MIL loves me so much - she said we'd work something out. She's too old to take on the physical demands of caring for B all by herself and she'll need someone to come in and help her but she said we'd find a solution. We're going to look into service organizations and see if they can have people come in and help with various things and there's the option of hiring a nurse from Poland or the Czech Republic (a cheaper solution than hiring a private nurse based in Germany) and there's also the possibility that friends of the family, Norbert and Helga, can help. They're both retired now and there's the added advantage that they also had a son who was a quadriplegic and they know what caring for a quad is all about.

In any case, we should be able to find a solution so I can make this trip. As of now I don't have any dates - sometime between mid-September to mid-October - it's really going to depend on when I can get a reasonably priced flight. I haven't even told my sister yet and this is the sort of thing we never mention to my mother until I'm on the plane but I feel 99% positive that I can pull this off.

And what will I do first when I hit my hometown? What I always do first. Drive straight to Sonic.

We're Not The Enemy

There's been a lot in the news lately about the family who has treated their profoundly disabled daughter with estrogen to stunt her growth and had her uterus and breasts removed in order to better manage her care. The treatment is referred to by them as the Ashley Treatment.

I'll admit that when I first heard of this treatment it struck me as being more than just unorthodox but downright drastic. Still I wanted to put aside my knee jerk reaction and think about what is really going on here.

I care for a fully grown adult quadriplegic. My husband is over 6'3" tall and he weighs somewhere between 150 and 160 pounds. If you don't think that caring for someone who's that tall and weighs that much is physically demanding then you come lift him for a while. I know first hand what it's like to heft passive weight all day, be on constant guard for pressure sores, be housebound because I cannot put my husband in his wheelchair on my own and a lift won't work with his particular chair. I know what it's like to have my back go out and my knees shredded because of the passive weight I have to lift and turn many times throughout the day. I also know what it's like to do this every single day, week in and week out, year in and year out.

I'm not going to go into the pros of the Ashley Treatment - you can go to their blog and read them yourself. And there are plenty of outraged people on their own blogs who are expressing their dismay at this treatment. I leave it up to each individual to form his or her own opinion but I still wanted to say a few things about this topic.

I found it troubling that Ashley's parents on their blog have had to repeatedly state that their reasoning behind the treatment wasn't to make their jobs as a caregiver easier and I thought "Well, what's wrong with a caregiver's life being made easier? Why is it somehow shameful for a caregiver wanting their job to be as easy and efficient as possible?". Ease and efficiency in caregiving isn't so we caregivers can be bothered as little as possible. It isn't so we have more time to shop and watch Oprah. Ease and efficiency means we're able to do what we do without punishing our own bodies. It means we can do what we do without burning out mentally and physically so quickly. It means we can worry a little less because when things go easier and more smoothly it tends to assist us in making sure the person we care for is happier and healthier. Getting a disabled person's environment changed makes them happier. Being able to more easily handle the body of a disabled person helps keep them healthier. Caregivers having it a little easier translates to us being able to give better care. It really is that simple. I absolutely believe that caring for Ashley will be made easier for her caregivers because Ashley will be a smaller, more manageable size. Lifting her will be less dangerous - immobile people have fragile bones and joints that can be easily damaged during lifts. Turning her, which is all-important for preventing life-threatening pressure sores, will be easier. Keeping her from menstruating lessens moisture against her skin, another major cause of pressure sores. Getting Ashley out into the world in a more convenient manner will be good for both Ashley and her caregivers because being housebound is a major component in caregiver burnout.

Some of the posts and comments on the blogs I read had feminists standing up for Ashley as a female but I read nothing about standing up for female caregivers. Most caregivers are female. Where's was their outrage at how female caregivers aren't respected and honored for what they do? Where is their effort to give caregivers the support they need?

There was mention in blogs that Ashley's parents have misdirected their focus and instead of coming up with a treatment that alters Ashley's body they should have been trying to get the system to change so that they could get the assistance they would need to care for Ashley in a fully-grown adult body. I view it as Ashley's parents understand the reality of what they're facing when they go against the system. They understand that the government doesn't want to spend any more money on helping the disabled and those that care for the disabled, insurance companies sure as hell don't want to spend money and the disabled and their families are pathetically weak against them. Instead of beating their heads against the system, they went around it and found a way to manage their child's care in a way that will keep her healthier and themselves able to personally care for her longer. A longtime caregiver will tell you that when you don't find a solution to your problem one way, you'll find it in another and sometimes you have to simply go with what works.

This blog contains a paragraph that made me immediately see that there are many who have opinions on this matter but a real lacking of understanding of the reality.

They did mention that it would be uncomfortable for the daughter to have large breasts, as she can’t be strapped in her chair that easily, and that it would be much less likely that she would have bed sores–but one would think (don’t know for *sure*) that after all these years, the wheel chair designers would have thought of something to help make it more comfortable for big breasted women to be strapped into their chairs. If they haven’t come up with something yet, I would be interested in *knowing* if there is any movement/petition/etc that I can hook up with to help make that happen.

I know the writer is making this statement with the best intentions but I honestly had to laugh when I read it. Yes, there may very well may be a way to strap in a large breasted woman in her wheelchair but can you guarantee that you could afford such a thing? Don't count on insurance paying for it. And don't get the idea that a strap couldn't possibly cost that much. Specialized equipment for the handicapped is a limited market and everything costs a lot. And I'll beg your pardon if I snicker at the idea of a movement or petition that will force a wheelchair manufacturer into making such a modification. If it's not going to make them money and there's a very small demand, don't count on it happening.

There's outrage out there about the treatment of this little girl and I respect differing opinions but I will also ask that it go beyond the expression of outrage. If you're outraged, ask yourself what you're doing to help prevent the need of such a treatment. Have you ever offered to help with a handicapped person so the caregiver can get a break or at least perform their duties in an easier manner? Have you ever asked your legislator to consider raising the funding for aid to the handicapped and the equipment they need for their care? Have you ever insisted that caregivers be screened so that known sex offenders aren't able to care for disabled people who can easily be raped or abused? Have you donated your money to assist a family with a disabled member in purchasing equipment they need but can't possibly afford? Have you committed yourself to taking over the care of someone if their normal caregiver were ever unable to continue their care?

Caregivers don't want pity or sympathy but they do need respect and the acknowledgment that they know far better than any outsider in regards what their disabled family member needs. We caregivers understand that those we care for are more than just bodies and have no need to be reminded of that fact. The people we care for are our spouses and children and siblings and we have dedicated our lives to them.