Pain

There's a great new article in last week's Time magazine about understanding pain. Every year it seems like one of these news magazines does a healthcare issue that focuses on pain and pain meds. This one was very good and I encourage everyone to go out and find a copy.

More and more Americans are suffering from chronic pain due to such conditions as Arthritis, Rheumatoid Arthritis, Fibromyalgia, unhealed injuries, etc. There is even a diagnosis now of Chronic Pain, with an unidentified cause. Doctors are pretty good at relieving pain immediately after an injury or surgery, but chronic pain often completely stumps them. Personally, I think its only recently that doctors have been forced to reluctantly admit that there is a huge pain problem suffered by people that is not just in their heads, and is not just people drug-seeking.

I have Rheumatoid Arthritis, a chronic condition I have dealt with since college. I am in various degrees of pain literally all the time. And yet, at times, it has proved from challenging to impossible to get the appropriate pain meds. It is getting even more difficult now because government agencies, in an effort to crack down on drug abuse, have started persecuting physicians who prescribe pain meds to patients. I asked my physician the other day for a stronger prescription due to increasing pain and he refused-directly because of new government oversight. He's becoming paranoid. I've become appalled; what are the millions of pain sufferers supposed to do? Our lives are becoming impossible because of drug abusers and paranoid doctors.

I can only be apprehensive about how this might affect both my and my father's futures. I've already had to struggle to get a prescription for my father for very legitimate pain. Will it only get more difficult for even the elderly to get the medications they need? I'm also a hospice worker-the stated goal of hospice is to make dying patients as comfortable as possible, especially by giving them as much, and more, humane pain medication as needed. Will hospice programs begin to struggle due to the government's inaccurate and ineffective war on drugs? While I think its tremendous that pain is being studied and acknowledged as a disease in its own right, I can only be apprehensive for the future of those people who suffer from pain and have a legitimate need for the medications that relieve it.

Enough is enough.

According to his caregiver, Dad is doing well. It's going slow and they're taking it day by day but his immune system is definitely taking longer to heal him than it used to. He has a follow up appointment to the surgery in a few weeks but I've decided to cancel all other doctor appointments, at least for now. I feel like he's just had enough poking and prodding in his personal areas for a while.

When they were preparing Dad for surgery, I could see in his face how puzzled he was to have all these people around him, doing things to him. But he seemed prepared to be patient and put up with it. But when he was in recovery, he seemed wholly miserable. After several hours of him lying in the hospital bed, not seeming to pull out of the anesthesia, we tried to get him walking around to see if we could get him to wake up and get going. It took his caregiver and the nurse to walk him around, and they had to manhandle him out of bed and around the recovery room. Watching the expressions on his face, I could see the anger and disgust at what was being done to him. I decided right then that it was time to take a break from the doctors.

He was supposed to go to the urologist to see if there's any physical reason(other than the dementia, of course) but I think that can wait for now. Personally, I think he's incontinent just because he's given up. But, its not urgent and I think we can decide later if we want to take him to get checked out. I continue to remember that if he was lucid, he would never have done any of the procedures he's had lately. His religious beliefs would have meant ignoring any symptoms and trying to heal himself through prayer. He would never even have gone to the doctor.

So for now, I'm going to try my hardest to respect beliefs that he adhered to all his life, and that he would continue to adhere to if he were able. I'm going to respect beliefs that I think are completely wrong and that lead to a lot of personal pain and suffering because I think its the right thing to do for his peace of mind and for mine.

Consequences.

I can't believe its been a week since Dad's surgery already. He appears to be doing just fine, with no ill effects from the procedure, unlike the last time. I am supremely grateful for this-no more trips to the ER because of excessive pain. I'm guessing that the caregiver is actually using all of the pain meds as directed by me.

I was surprised, however, at how I felt after the procedure. My book, of course, has not yet come out but a major part of my story has been how it felt to take care of Dad and deal with his medical issues when he never lifted a finger to help me with mine. As I explained, Dad is a Christian Scientist, and he does not believe in the efficacy of medical intervention, nor does he believe that a body which is a reflection of God, can truly get sick. I don't subscribe to these beliefs, but I was raised with them, and as a child, was not encouraged to show illness or report symptoms, something that has left a lasting legacy in my body. When I came down with a serious chronic condition as a young woman, I had no idea how to take care of it and didn't seek medical help until a lot of damage had been done to my body. During this time, I lived with Dad, and he, because of his beliefs or for other reasons, never acted to help me, even though I was seriously ill.

In my book, I cover how hard it was to step in and take over organizing Dad's life, and my feelings that he was bowing out of life and leaving me to clean up the mess. But I also discuss how very hard it was and is to help him deal with the medical problem and go to the doctor. In essence, it makes me angry on levels I'm not always aware of to have to care for a parent who didn't care for me. The story is bigger than this, of course, and I do love my father and want to care for him. But I know I can't be the only one whose parents weren't always as caring or present for us as we could have wanted. For all those people who have had trouble admitting that at times they feel anger towards their parent with dementia, I'm right there with you, and I understand. It's not all love and light, sometimes its about doing something you have a problem with because you know its the right thing to do.

What an Experience...

Well, we've gotten through the surgery, although not without issues. The surgery itself went well and Dad came through just fine. But am I wrong in how surprised I am at how dementia seems to throw most medical practitioners. Its like they've never run across it before and don't know quite how to fit it in their little procedures and rules.

Every medical person who entered the room where Dad was being prepared for surgery seemed not to know about his dementia, addressing him each time as if he could respond to their questions. They would then turn to me when nothing was forthcoming and I would have to repeat that he had dementia and that I would be answering any questions FOR him. How is it possible that something that is becoming so common is such a mystery to doctors? And I really hate having to say over and over again that Dad has dementia right in front of him! I don't know how much he understands but can't imagine it helps to hear over and over again. Why his overall diagnosis not written clearly on his chart is what I'd like to know.

It left me with the desire to open or help open a clinic staffed only with doctors who understand or have some experience with dementia. Not dementia specialist but regular doctors and surgeons, podiatrists, internal medicine, etc., that know how to deal with those with dementia. I know, I know, its a pipe dream but it seems like a good idea to me.
TBC

Sick of It 2.

Dad had been seated in the exam chair for most of his appointment. The doctor decided he needed an EKG, so he brought in his little cart, grabbed his paper full of recording electrodes, and began sticking them all over Dad's chest. He connected the many leads, one to a sticker, then activated his machine to take a reading. As it turned out, he had to do two, so Dad had to sit there, wired up, for a little bit longer. I could see his hands picking at the stickers, not knowing what they were.

At this point, the doctor told us we were headed to the lab, so Dad's caregiver eased him out of the exam chair and manuvered him over to the waiting wheelchair. It seems that Dad had had enough, however, and he refused to bend his legs and sit down. The caregiver patiently tried over and over, trying to get Dad to grab the chair behind him and sit down, sometimes pushing him gently on the chest. Like a child who becomes completely rigid so he doesn't have to get into his high chair, Dad pulled his own brand of rigidity and rebellion, refusing to sit down. The caregiver and I looked at each other, shrugged, and decided to let Dad walk a ways. I grabbed the wheelchair, the caregiver grabbed Dad and away we went. Eventually, we stopped again, and Dad acquiesced to being in the chair, letting us wheel him away.
I couldn't help but applaud him for his refusal to play along. He doesn't have the words anymore to express displeasure and refusal. People make him do things all the time. Using his body, the only means he has left, he made it very clear that he wasn't having it, and it was up to us to listen to his silent language.

Sick of It.

Well, we're one more doctor's visit down, which is a good thing. I feel so bad for my poor Father, however. I can tell he's getting utterly sick of being taken to the hospital, poked, prodded, undressed, dressed, and just generally forced to do things he doesn't particularly want to do. I'm beginning to think he actually recognizes the surgical clinic since his face gets a little tense when we get there. He did seem happy to see me when his caregiver rolled him up to where I was sitting. Just about the only benefit of all of this is the fact that we're seeing more of each other, so I think his memory of me is being jogged a little more often.

I caught an expression on his face this afternoon, as the doctor was listening to his heart. It was an expression that I instantly recognized from my childhood. It's a small expression, but I know it so well. A twist of the lips, followed by a tightening of the whole mouth, and a slightly impatient look in the eyes; it's his look when he's a little disgusted with something or he doesn't approve of what's happening. He used to use it on me all the time. I don't blame him in this instance, however. I'd be a little disgusted, too.

At the last minute, the doctor gave us a lab sheet and told us we needed to take Dad to get a blood draw. We had already been in the clinic for an hour and a half(for a 10 minute exam) and were exasperated at having to stay, but we had to do it. As we tried to put Dad back together and get him back in the wheelchair for the trip to the lab, he protested in the only way he had left. TBC

Surgery

The surgery for Dad's hernias is rapidly approaching and I'm a little weary. This is one of my first forays into the world of outpatient surgery but already I don't much like what I see. We were able to schedule a day for the surgery, but for some reason known only to themselves, they were unable to tell me the time of the procedure. They will call me the day before and tell me whether its morning or afternoon. I'm hoping it isn't morning as Dad doesn't do that well in the morning, although, considering he won't have eaten since the night before, maybe morning would be better.

Another annoying thing was the need to schedule a pre-anesthesia appointment. I don't know what they are going to do exactly to test his capacity to handle anesthesia but I don't know why they couldn't do it at the first appointment. It just means dragging poor Dad out to yet another appointment, although I think he actually enjoys being out in the car. Either way, lots of appointments.

We've been lucky so far not to have to do all of this medical stuff, due to Dad's amazing health, but I think our luck may be about to run out. I see a year faced with a lot more trips to the doctor, and potentially more surgeries, which doesn't make me happy, nor will Dad enjoy it, I'm sure. More medical decisions to make for Dad, made even harder by the fact that were he lucid, he would choose against them all. I'm thinking my schedule will need to be even more flexible as his immune system continues to wither, and I feel for him, all of this poking and prodding, this humiliating stuff happening to him, all things he would never choose and never want and be embarrassed by. It's hard to watch, as I"m sure many of our community know and understand.