Wednesday, March 30, 2011

Staying here.

As I posted a few months ago, I got engaged in January and am very excited to get married. As people who are soon to completely share their lives must do, we've talked about what we want to do and achieve, where we want to live, what our dreams are-all that stuff. Luckily, our dreams for the future coiincide in many ways. The one place they didn't, however, was the possibility of having to move in order to help my fiance achieve a long-time dream.

He wants to get an advanced degree in his field of interest, which is unique enough that there are few colleges that offer it. Before he met me, his intention had been to get accepted to a college on the east coast, move there, and start a new life. We have talked about the possibility of moving in order for him to achieve this, and I would be willing to do it, even though I don't really want to leave the area. The problem is, my father, and who would do what I do for him?

I year or so ago, I would have had no problem leaving but now Dad's health has become so fragile, that it appears he needs a family member in addition to his caregiver. I knew this would be a long-term job when I took it on, however, I didn't really expect to get married and possibly have to move. In all our conversations, my fiance and I both agree that this is a big issue and a big deterrent to moving. The last thing I want is for my father to be responsible for us not living our lives and my fiance achieving his dreams-I would really resent my Dad then!

It appears that we have some other options now to achieve what we both want to achieve, and the possibility of moving has become more remote. But it still remains in the back of my mind. The one huge reason why there are certain things I can't do, at least until Dad is no longer with us, and I have to admit I feel a certain resentment about it.

Thursday, March 24, 2011

Last appointment cont.

I'm sure the caregiver thought I was angry at him since my face was set in irritation and anger. He started apologizing again as I approached them and I tried to quickly put him at ease, explaining my ire was reserved for the idiot nurses who couldn't manage to come up with some paper towels. I took another good look at Dad and the inside of the care, and headed back into the hospital, telling the caregiver I was going to get paper towels. At the first restroom I saw, I started yanking papertowels out of the dispenser, creating quite a nice pile that I then took back to the car. Using only one towel and a trash bag, the caregiver had managed to get Dad out of his jacket, which took the brunt of the explosion, and cleaned him off fairly well. Dad was still shivering and looking decidedly stressed out, so we planted him into a wheelchair and I took off for the warm interior of the hospital while the caregiver turned to his noxious car.

As I pushed Dad through the corriders I kept repeating how sorry I was, how after this appointment we were never bringing him back here if we could help it, and trying to cheer him up a little. I think I actually achieved it as he seemed a little more calm and curious by the time we got to the doctor's office. Sitting there, waiting to be called in, I again assured Dad that this was it for doctor's visits. I have no idea whether he understood, but I hope so and I hope it relieved his stress.

We hurried the doctors through their inspection of the surgical site, pleading Dad's stress and discomfort. I must make a note that smelling of vomit is one way to get medical personnel to attend to you more quickly! We finished up the visit and began to wheel Dad back out of the office. As he and the caregiver got into the elevator for the trip down to their fragrant car, I walked the other way to the main parking lot, limping from the speed walking I'd had to do earlier. I felt sorry for Dad, for all the stress and trouble, knowing that this very well could have been his way of expressing his displeasure and discomfort at all of these prying and prodding visits. I'm going to keep my promise to him as best I can, and honor his beliefs as well as I can. There will be no more doctor visits unless he's in terrible discomfort of pain, because the doctor's visits themselves are causing more pain and trouble than any problem he's had.

Tuesday, March 22, 2011

Last Appointment.

Well, we had a surgical follow-up appointment last week to make sure my Dad's hernia surgery is healing well. I had already decided that after this visit there would be no more doctor visits except under the most extreme conditions. Unfortunately, there was no way to inform my father of this and on the way to the follow-up he staged a protest of sorts.

I had reached the surgery center ten minutes early and, not seeing my dad or the caregiver, I stood at the desk. My cell phone started ringing and as I pulled it out of my purse, I could see it was dad's caregiver. I answered, thinking perhaps they were late, only to hear that they were actually at the front, but Dad had been sick all over the caregiver's car just minutes before pulling into the parking lot. As I felt my mouth set in displeasure at the whole situation, he asked if I could find some gloves and towels or something else to clean it up. I told him I would do what I could and hung up.

Now I don't know if I just caught the nurses at a bad time, or maybe they've never really experienced anyone vomiting anywhere but neatly into a sink in the doctor's office, although I can hardly believe that, but they were incredibly slow in acquiring something for me to clean Dad! I waited, fuming, for fifteen minutes while they puttered around and went back and forth and finally they gave me two towels, one damp, and a small plastic baggie in case he was sick again. (!)This seemed like an incredibly inadequate response and I was a little perturbed by the lack of real material but I left and moved as quickly as I could through the corridors to the front door. As I came out of the automatic doors, my eyes began to scan for the white SUV and I finally saw it a ways down the driveway. As I hurried up, I could see what a terrible mess it was-my poor father sitting literally in pools of his own vomit. I'm not good with vomit at the best of times, and this was one of the worst things I'd ever seen. The caregiver would be lucky if he ever got the smell out of his car.

Wednesday, March 16, 2011


I have a new hospice patient who I visited the other day. She was being taken care of at home by her daughter, who was her primary caregiver. It was an older house, in one of Seattle's neighborhoods that is slowly being taken over by wealthy, young families, although there are still a few older holdouts who you know have been there since they started their families. It looked like it had been a lovely house at one time, but there hadn't been the time and money lately to take care of it. Wallpaper in patterns not seen since the sixties peeled slightly from the walls. The ceiling showed several large water stains and some crumbling and curtains and blinds were old and dusty. For all that, however, the room where my patient lay on her hospital bed was clean and cozy, and as many things that would add to the comfort of the patient were grouped around the bed.

The patient's daughter let me in and gave me a hug, even though we had only just met. She was confused at first about my purpose, trying to make me comfortable, or fetch me a coffee, or entertain me. I assured her repeatedly that I was there for her, there to help her and give her a little respite from the 24-hour care. And I could tell that even though I saw pictures of a man I took to be her brother, that she was it, she was the one on the front lines with her mother, there all the time. And she was so lovely with her mother, talking to her, asking if she needed anything, stroking her head gently. It was a lesson to me again about care and compassion.

And as I sat there next to the hospital bed, keeping the patient company quietly, looking around the room, I took in all the evidence of little money. A run down house, no in-home care, old fixtures and furnishings. I gave thanks fervently yet again for the fact that Dad had plenty of money and we could afford, not only to get him top-notch care, but also to be, in a sense, removed from the situation. We have enough and more than enough to do everything that Dad's illness requires.

I was able to get Dad in-home, 24-hour care so he could stay in his home, and was now able to pay someone to perform 24-hour care now. I'm so grateful-it could have just as easily been me performing the feats this woman was performing for her mother. It could just have easily been me on the front line, in a crumbling house, responsible first-hand for care, instead of at a remove. It made me admire this daughter, and all others like her, who could do first-hand with such love and compassion what I could only do remotely.

Friday, March 11, 2011


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.

Sunday, March 6, 2011

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.