Caregiving

The problem with fibro, or just about any other illness, for that matter, is that life doesn't stop just because you do. Most people are caregivers of some sort. It doesn't mean you care just for elderly or sick people. If you have an immediate family and children, you're a caregiver. If you have pets, you're a caregiver.

I'm a caregiver, I have both pets and elderly parents to care for. The pets aren't usually a problem. The parents are. My father has dementia, and it is getting progressively worse. This past week, for two days he was unable to sit up, stand up, or walk. I won't go into all the gory details that the logistics of this debilitation entails, but we ended up at the emergency room last Tuesday afternoon.

It started with a call from my mother. "I need help getting him cleaned up and changed."

He had problems the day before, so this was not unexpected. I said I'd be right over.

It turns out, he had tried to get out of bed during the night, and both he and my mother had fallen. She made him comfortable on the floor, since he was too heavy for her to move. She didn't call me until nearly one o'clock in the afternoon. My father had been laying on the floor for hours.

I cleaned him up, dressed him, but I too couldn't get him off the floor. We did not know why he suddenly couldn't support himself, and decided that a visit to the hospital was necessary. We called an ambulance.

I started to worry, when the attendants wanted his DNR. This is the do not rescucitate order. "Did they think he might die on the way to the hospital?"

His vitals were fine. The more I thought about it, the less worried I became. He's been this way for hours, he's not going anywhere yet. My father, despite all his ailments, has this amazing resiliency.

If you have never been to an emergency room, it is a torturous experience. You wait and wait and wait. We knew this. We have been to the emergency room several times in the past few years. I always take something to do.

My mother on the other hand, takes nothing, and despite our vast experiences with emergency rooms, she complains constantly the whole time about how long it's taking. While she was doing this, my dad was trying to escape. He kept trying to sit-up and would pull off all his monitors. They'd reattach them. He'd start all over again. Between the two of them, I was ready to scream.

We arrived at the hospital between four and five in the afternoon. We finally got home around 11 pm. Yes, believe it or not, they released him. The blood tests showed no signs of infection or any other trouble, so they gave him fluids.

After his second IV bag, the doctor decided to see if he could walk. They got the walker out, and two nurses escorted him around the floor. He did just fine. Here was a man who couldn't even sit up a few hours ago, using his walker with no problems at all.

We took him home. Unfortunately, he felt better, and became less docile and more belligerent. We went through quite a struggle getting him settled for bed. I finally got home to my house around 1 am.

Between the physical exertion and the stress, I woke up exhausted the next day. Anyone would. My muscles were aching, my bad wrist and back were aching from all the pushing and pulling that occurred over the last couple of days. I could feel a flare coming on.

I was fatigued but, I had a deadline to meet. All the other things I needed to do had to go on the backburner while I struggled to meet my deadline. It took me the rest of the week to recover. Even now my arm and lower back are still giving me some trouble.

Many of the people I interviewed are caregivers in the family sense of the word. More importantly, some are caregivers as a career. Because of her fibro, Kristy had to give up caring for children because she could no longer handle the lifting required. Carmen had to give up her job as a nurse technician when she damaged her shoulder lifting a patient. This set off a series of operations along with the fibro. Misha still works and loves her job, but finds being a radiology technician physically demanding and very hard on her fibro.

Like it or not, we continue somehow, but the stressful demands of caregiving, places and even greater burden on those who suffer from chronic pain conditions.

An Appointment with the Dentist

I suffer from temperomandibular joint disorder (TMJ). This is very common in fibromites, but in my case the fibro did not bring on the TMJ. I believe the TMJ was the cause of the fibro.

In my early 30s, I was knocked flat by a volleyball bumped by one of teammates. It hit me square under my lower jaw and laid me flat on my back. I got up, finished the game, and thought no more about it.

Then the facial pain started. I thought it was my sinuses. I would get intense headaches, and my teeth would ache. This went on for quite a few months. I started getting severe earaches and muscle spasms in the jaw. By the time I went to the doctor, my bite had shifted because of the muscle spasms. My teeth were not hitting together correctly. The doctor diagnosed TMJ and sent me to the dentist. It took months of eating only soft foods, a bite-guard, and two years of physical therapy to bring my TMJ under control.

Now, roughly 15 years later, my TMJ is well-controlled. I wear a bite-guard nightly and I know the signs of a recurrence. I can proactively prevent or minimize an attack through the exercises I learned many years ago. 

I have never feared a dentist visit. I tend to be meticulous about my dental hygiene. But dentist visits are problematic, because it requires having my mouth open for long periods of time. This can set off the pain and muscle spasms of TMJ. When I go to the dentist, I expect my jaw to ache afterwards. I expect to have a mild headache. I do my isometric exercises as soon as the visit is over.

Something that didn't occur to me until after my recent visit, was that a visit to the dentist can also cause my fibro to flare. I am always uncomfortable in a dentist chair. Not just because my mouth is being forced open wider than it wants to go, but also because the chair bothers my back.

On this last visit, I had two procedures back-to-back. I was in the chair for three hours. By the time I returned home, not only was my jaw aching, but my whole body. I had flu-like pain throughout, especially in my back. My skin hurt, and just leaning back in a chair was agony. Fatigue and a bit of nausea crept in. I ended up taking some acetaminophen and sleeping the afternoon away uncomfortably. Fortunately, the flare was short-lived. A muscle-relaxer and more acetaminophen at bedtime, and I felt fine the next morning. Now when I go to the dentist, not only do I have to be proactive about my TMJ, but I have to consider my fibro as well.