A Week in the Life of an Elder Caretaker

To say the last 15 months have been difficult for my mother and the rest of the family is a gross understatement. I can’t think of anything more difficult than having to watch someone you love suffer in tremendous pain. It’s like being in one of those war movies where you are forced to watch the enemy torture and kill your best bud right in front of you.

Since August 2014, my mother has suffered with a fall, a concussion, a slashed forehead requiring stiches, a broken 5th metacarpal bone in her right hand, a partial cast that pained hand arthritis, worsening arthritis in her back, psoariatic arthritis, tooth infections that were escalated by an autoimmune drug she had been taking, dental surgery, nausea to the point where she can’t eat, physical therapy, MRIs, cat scans, XRAYS, multiple bouts of sciatica, and finally spasms that rocked her entire left leg, leaving her in excruciating pain.

We took her to the ER. That was a fucking nightmare. What she went through deserves mountains of expletives for the simple reason that a trauma occupied every single doctor for hours while my mother screamed in pain. For hours. Multiple times, I was a sobbing mess. At one point, I lost my cool and screamed into the ER for someone to please help my mother. Nope. No doctor. No pain management. All you other non-life threatening people problems can just sit and suffer. I’ve never heard of anything so atrocious. Last night, I felt an anxiety attack coming on so I took half a pill I got from my primary care. Five minutes later, I was sobbing.

Once my mom was admitted, the care was a billion times better. Four days on, she’s doing much better. My mom’s taking antispasmatics and pain meds. PT has come by and done some stretching. She’s had two MRIs, a sonogram, and an echocardiogram. From what we know so far, tightness in her hip and pelvic area is at a max and throwing her body out of alignment. She looks better even though she still has some pain. Tomorrow, she’ll probably be discharged with meds, an RX for PT, and a plan to get her out of pain. None of us know whether some of the back pains she’s been having were because of the tightening in the hip and groin that seem to have her body in a grip. We’ll see.

I moved back to my hometown a couple of years ago so we could be there for my mom when she needs us. I haven’t regretted the move for a second. I only wish she could be in less pain. Here’s to hoping that she’ll have a future with a lot less pain and more mobility.

The #1 Lie I Like To Tell Myself

As a professional procrastinator, I like to put everything off until the last minute. My experience with myself is that, if I begin working, I don’t know when to stop. I have tried to compensate by telling myself that I’ll do this thing for myself now and get to the work later. As long as I’m the only one I have to worry about, this is a fine plan.

The problem is that I am not the only one that I have to worry about. We don’t have kids so this is usually the case. However, I do have an elderly parent with pain issues that seemingly Will. Not. Go. Away. My mother has spent the last 14 months in and out of an excrucating amount of pain. My family and I have dropped everything at the last minute to see that she gets the care and medication that she needs almost every single month, sometimes for a week at a time.

Due to complications from an autoimmune medication that my mother was taking, she discontinued an otherwise effective medication. We didn’t really know how effective until she had to stop taking it a month ago. The medication continued to work for a few weeks. Into our fourth week, we now clearly see that it had been working more than we realized when a highly intense form of sciatica hit.

I called her doctors and picked up a prescription. My husband worked from home today so I could take a memoir writing class this afternoon. In my place, he called 911 to advise on my mother, had the prescription filled at their instruction, made lunch for my mother, and ensured my mom took her medication that thankfully worked within the hour. I felt better that she seemed to be in less pain.

After I came home from class, I checked on mom: sleeping. I had my own dinner and then got her up to take her medication again. My husband stayed with me, helping mom with dinner, clean up, and getting around. I set up a commode on the toilet my Dad used to use because it means she doesn’t have to bend down as far.

I wrote a medication diary so I can keep track of the pain meds that she’s now taking. She had mentioned she was chilly so I took her temperature, which was raised. I gave her an additional Tylenol only. We will check her temperature as well as ensure that she eats and takes her medication on an alternating basis.

I put a lamp in her room so she doesn’t need the bright overhead light. I set her up with throat drops, her phone, and water. She drowsed and I came up upstairs to our apartment to have some lemon ginger tea and write. As I sat down, I asked myself, “When are you ever going to learn? When in doubt, write.”

The Trials of Lower Back Pain

As far as I can work out, I managed to hurt my back because of a stomach ache. On my way to my writing critique group on Saturday, I started feeling discomfort in the middle of my colon. I had, in the past week, failed to take some medication that makes me comfortable. I knew the discomfort would soon pass, but I sat in writer’s group massaging my belly.

After I got up from the table, I noticed that my lower back and glutes seemed to be hurting. I had Mark carry my bags on the way home. I didn’t want anything to add to the strain in my abdominals. By evening, my stomach felt better. I went to bed hoping that I would feel better the next day.

Instead, I woke up with the same lower back and glute pain. I decided to first take a shower, not part of my normal routine. With my soaped cloth in hand, I bent down to wash my right foot. And that was it. That did it. The pain in my lower back and glutes ratched up, and I had to slowly lower my leg before I could straighten up. I had my husband dry my lower legs because I didn’t want to do any more bending.

I was in so much pain that I took Aleve and spent most of Sunday in bed. Mark helped run a bath with Epsom salts, and that seemed to help a little bit. When I woke up this morning, I took more Aleve and went to the pool at the gym and did some physical therapy exercises that I’d learned long ago. The exercises were aimed at helping my back and core, so I went back to it although with I only went as far as I was comfortable. Then I sat in the hot tub.

I’ve noticed that, whenever I have stomach pain, I end up tightening my muscles as if I could somehow steel myself against the pain. The stomach pain I had must have begun that process while I was sitting in an unfamiliar chair. When I’m in these states, I’m not paying attention to my posture or how my muscles are doing. My mind is too focused on the pain and the panic that I’m going through.

Tonight will call for some trigger point therapy and another Epsom salts bath. Even though I just had a monthly massage last week, I made another appointment for Friday. I am not going earlier because I know it will hurt way too much. I’m going to be spending time at the pool and the hot tub and in my bathtub until Friday. Let’s hope that this can be worked out this week because I’d really hate to go away for a few days next week and be in this shape.

If anyone has any good tricks or remedies to release the muscles or lessen the pain, I’d really appreciate hearing what your suggestions are.

Brief Fibromyalgia Health Update

Some of you know that I have fibromyalgia. It’s not a disease, but a syndrome of problems that results in, among other things, chronic pain, chronic fatigue, and poor sleep. Towards the end of the last year, I began seeing an integrative medicine doctor in the city who prescribed me some supplements.

When I saw him in March, I said I did not think a few supplements were helping so I was stopping them. A month later, I was exhausted again and went back on. Lo and behold, my energy level rebounded in days. I had a follow up recently and told him about this. I also said that what I really wanted to see was an improvement in this chronic pain that I live with.

The pain is both chronic and changes little. Since summer began in earnest with high humidity and heat, I have been feeling worse. Warm and drier is good; hot and humid not so much, unless I’m at the beach. Bitter cold is no good, either. Being warm dressed on a semi-cold day feels nice. And what I mean by nice is a type of weather pattern that doesn’t somehow make my pain worse.

About 10 days ago, I bought a new powder multivitamin that an online integrative doctor sells. My real life integrative doc is friends with online doctor, and I have bought supplements from online doctor’s web site before. I had just finished a packet of multivitamins, but didn’t want to continue doing that. So I bought this powder that tastes very much like Tang.

And ever since I have been taking this multivitamin in my water every morning, I have had a lot more energy throughout the day. Even better than that, I have been able to tackle tasks around the house with ease. When I say ease, I mean that I simply do them after I decide to do them. When you live with pain and fatigue, sometimes the things you want to do don’t get any farther than ricocheting around your brain. After a while, you feel guilty because there are things you should be doing without an ounce of motivation to do them. The vitamins have brought me energy and removed the procrastination. Somehow.

Now the bigger mountain is the one built on pain. My doc suggested I increase one of my supplements called Ribose, which he has claimed has worked to help eliminate persist pain in his other fibromyalgia patients. I will let you know one way or the other. I can tell you know that, if the Ribose does work to eventually eliminate my pain, you will most likely found out when you hear my cry for joy instead of on this blog.

Here’s to hoping!

Teeth Whitening Horror Show

WARNING: If you do not like to read about dental work or pain, then you probably want to skip this post.

Before my Zoom teeth whitening appointment, I realized that I did not really know what was going to be happening to my teeth. Was it a gel? Was it laser? I briefly looked at the Zoom website. The information was general, and I could not find step-by-step information. When I got there, Sarah was ready for me. I told her that, when I’m afraid of something, I try to ignore it as long as possible instead of educating myself on what’s going to happen to me. I don’t want to be afraid, but by avoiding information, I make things worse for myself. Deep down, I think that, if I know what will happen, that I will obsess about it, and I imagine that to be worse than what I do to myself: bury myself in ignorance, avoidance, and worry.

Sarah sat me down in a chair and explained what would happen. First, a mouth guard would be inserted and my mouth packed with gauze to soak up the saliva. Next, a barrier gel would be applied to the gums and roots of the teeth to buffer them from the whitening gel. After the gel was brushed onto my teeth, an ultraviolet lamp would be positioned over my mouth and turned on for 15 minute sessions. Between each session, the old whitening gel would be removed and a new layer would be applied before putting the lamp back in position. The final steps before starting the whitening was to place a cloth barrier around the mouth and to give me a pair of orange plastic glasses to protect my eyes from the ultraviolet radiation. Sarah told me that, during the whitening procedure, I might experience a tingling in my teeth as “tiny, electric shocks”. I said, “Whoa!” That sounded kind of scary to me, but I felt more a sense of surprise than fear. Sarah asked me what Pandora station I wanted to listen to, and I asked for something relaxing. She chose a spa music station, and I started to relax.

I felt lightly apprehensive through the first session, anticipating a pain that did not come. My teeth did start to feel increasingly tingly throughout the next hour, but it felt more like my mouth was becoming minty. There was no mint taste, just the feeling of minty tingling on my teeth. Towards the end of the first whitening session, I told Sarah through my mouthguard that I thought one of my lower left teeth felt sensitive. Sarah reapplied the barrier gel in that area, and we proceeded with the second round of gel and lamp. The four 15-minute sessions passed faster than I thought they would. When Sarah handed me a mirror to look at my teeth, I felt like I was looking into someone else’s mouth. My teeth were considerably brighter with a slightly uneven coloration to them. Sarah told me that they would continue to whiten over the next 24 hours, so this wasn’t even the final shade. I would have to go back in a few days to get a color match for my crown.

After Sarah took out the gauze and mouthguard, she asked me to sit up and rinse. That’s when I felt my first shoot of pain in one of the lower right teeth. I told Sarah about it, and she said I could apply the topical pain relief gel to the inside of the upper and lower teeth guards if I wanted before I left. I wavered, but decided to wait. She packed up samples of toothpaste and gave me my Zoom supplies – the mouth guards, the pre-filled topical pain relief syringe, and a booster syringe of the whitening gel that I could use in a few days to brighten my teeth even more or in a few months.

When I brought my stuff up to the front desk to pay for my teeth whitening, Mina asked me how I was doing. I told her that I was feeling some tingles of pain in my teeth, and I wasn’t sure whether I should put the topical gel in the trays now before I leave or wait. Without asking, Mina used her headset to ask Sarah to come to the front. I told Mina that I was having trouble deciding what to do because the pain was causing a stress response for me. She told me not to worry as she took my credit card. I felt pain flash in a tooth on the top right. I asked if they had Advil that I could take. Mina deftly used her headset to ask another technician to bring me Advil. Within 30 seconds, I was taking Advil and signing my credit slip. Sarah set up the topical pain relief gel in the teeth guards for me. I put them in, hoping they would help. Before I left, Mina told me to call them if I continued to experience pain. I mentally worried about whether they would even be open later for me to call. Mina and Sarah told me to take more Advil before I went to bed that evening and that I would be feeling better by tomorrow.

If I hadn’t known that I was in my dentist’s office, I would have thought that I was in a spa given the level of service I received there. In addition to the great dental care I get there, this level of service is the kind of place I need, given my sensitive teeth and my fears about dentistry. When I go back for my crown, I’m going to use my last Ativan pill to chill me out so that I don’t start crying hysterically before any work is done like I did the last time. Studies have shown the repeated exposure to pain sensitizes – not desensitizes – a person to feeling pain more acutely in the future. With my history, I am screwed.

On the ride home and for hours afterwards, my teeth spiked with pain of varying intensity levels and length of time. Around 7:30pm, the pain spread throughout my upper and lower teeth. The pain did not abate, unlike the first few hours where I had some rest in between flashes of pain. The lower teeth had the most intense pain. I felt like my gums and teeth were on fire. The Advil I had taken in the office at 4pm had worn off. I figured that the next 24 hours were going to be the worst. At 8pm, I took more Advil. About 20 minutes later, my dentist called me on his cell phone from Citi Field, the Mets new baseball stadium, to ask me how I was doing. I told him how I was feeling, and he told me to alternate two Advil and two Tylenol every two hours. I asked him if I should take some of the Tylenol 3 that he had given me for my temporary crown. He said he didn’t think it was necessary. I didn’t argue with him. I could take the medicine if I felt I needed it. Mentally, I decided to take 1 regular Tylenol and one Tylenol 3. I knew I would need the codeine to help me sleep. I just had to wait until 10pm until I could take the Tylenol.

I went downstairs around 9:30pm to retrieve my cat Norman. While talking to my Mom, the pain along the bottom teeth started getting so bad that I could barely pay attention to what she was saying. I decided to excuse myself to go upstairs to write. I knew that, if I told her why I wanted to go, she would be intensely worried until I could assure her that the pain was all gone. When I inadvertently clenched my jaw today, sharp spikes of pain reverberated everywhere. I had to fight against my own instinct to clench. It was not easy. I automatically closed my eyes in response and wrapped my lips inwards around my teeth guards, waiting for it to pass.

Surprisingly, I fell asleep pretty normally, but was up at 12:15am. I took Advil and fell asleep. I awoke at 3:15pm, took Advil, and went to sleep. Up at 5:20am and took Tylenol & Tylenol 3. The pain had already began to subside from excruciating to bad. Went back to sleep. Up at 7am for thyroid meds. Up at 8am for my daily Gabapentin & more Advil. I slept until 10am, and then dragged myself out of bed. My mother called me to check on me. When I told her I was feeling better, she asked whether I would ever do it again. I told her yes, I would, but next time I would either ask for stronger pain meds or try a different method that did not result in so much pain. Clearly, brushing with Prevident, a prescription-strength fluoride toothpaste for the past month, did nothing to help. Because the pain had died down from excruciating, I switched to two regular Tylenol. I kept to the every 2 hour schedule until around 4pm. I felt I could space it out to 4 hours between doses, which is much more normal. When bedtime came again, I took a Tylenol 3 with a regular Tylenol to ensure I slept well for a second night. By the time I woke up this morning, I was feeling much better. Unfortunately, a storm front moved into the area and, with it, an terrible headache. Compared to the pain I’d been through after my teeth whitening, two Advil were more than enough to deal with it.

Now that it’s two days later, my teeth don’t seem all that much lighter. They definitely are, but I think I’ve already adjusted to seeing this new color. The only way I know that it worked is because the temporary crown that was put in is a much darker color. Before the whitening, it matched. Tomorrow I go to get a final color match, and then the crown will be made. I get to go back to get that done. I am so not thrilled.

Illness, Alienation, and PTSD – Part 5

Read Part I, Part 2, Part 3, and Part 4

The best part of the summer before my junior year in college was getting to spend time at my brother-in-law’s summer house out East on Long Island. The cottage was your typical summer cottage. It had no internal plumbing; you took showers and went to the bathroom outside. Situated near a cliff, you had to climb down a ladder to get to the beach. The waves lapped a dozen yards away. I remember sitting on the beach, enjoying the warm weather, and spending time with my family shortly before I had to go back up to college in Massachusetts.

I did not return at the end of August 1991 as was planned because I was taken to the hospital with stomach pains that turned out to be another intestinal blockage. I remember the doctors saying that they did not want to operate on me if at all possible because it had only been 10 months since my last surgery. Instead, they inserted a nasal-gastrointestinal tube (NG) to see if it could relieve the pressure and, by proxy, the blockage. The NG tube did relieve the pressure and the blockage, and I was able to leave after proving that I could eat and pass things along my intestinal tract.

My joy at avoiding surgery was short-lived, however, and I was taken back to the hospital with stomach pains within a couple of days of going home. Again, the doctors did not want to operate, but they did insert the NG tube. Again, the pressure was relieved, the blockage unwound itself, and I was able to go home after proving I could eat and pass things along. Three weeks after my anticipated return date, I was able to go back to school. I had signed a lease with some college friends starting the prior July, and I returned to my apartment.

I wish I could say that this was the last of my intestinal blockage saga, but it was not to be. Six months later in March 1992, I went to the hospital with stomach pains. The pain of your intestines twisting around themselves is a pain unlike no other. I would never wish this on anyone, not even the worst of the worst. The surgeon who operated on me told me that the kind of pain I experienced is even worse than the pain of childbirth. I was also the youngest patient in the hospital with as many surgeries as I’d had by my age.

My sister M who used to cut hair got me the name of the surgeon through one of her clients, a doctor. The surgeon was the Chief of Surgery at Cambridge Hospital and performed surgery at Mt. Auburn Hospital. Although he has long since moved away, I still remember his cutting humor, his straight talk, and his lack of reassurance. He told me that, even if the surgery was successful, there was no way to guarantee that having a blockage would not happen again. It could happen the next day, in 20 years, or never. I was a wreck. How was I supposed to live my life this way? At any given time, what I had worked for could be taken away, and I could back in the hospital with another blockage and another surgery that would only leave adhesions, ensuring future problems. One of these days, someone is going to find a way to eliminate adhesions. When they do, I will tithe half of my income to them. HALF.

This surgery, like the one in 1990, resulted in my staying in the hospital for approximately three weeks. In addition to the NG tube, Dr. F wanted to perform a certain procedure wherein a weighted balloon tied onto the end of a tube was inserted up through the nose into the stomach. The balloon and tube were to pass through my intestines for a designated number of days until it had gone far enough into my body. During the surgery, Dr. F would arrange my intestines in such a way to minimize adhesions. This all supposedly would help with that since it seemed that adhesions from prior intestinal surgeries seems to the main cause of future intestinal blockages. After the surgery, the tube was cut at the very back of my mouth as far as they could go, and the tube was allowed to pass through in the usual way. I can honestly say that it is a very weird experience to go to the bathroom one day and have to pull a balloon and tube out of your ass.

In some ways, I was much better off than when I left the hospital in 1990. I did not have raging infections; my length of stay was due to the added procedure of the balloon tube that needed time to move through my system. In some ways, I was in a bad place. In my first semester at college, I went from 123 lbs. to 113 lbs. because the Aramark dining hall food was both disgusting and often improperly cooked. By the end of my first semester, I would only eat salad for dinner and then have a shake later that night when I was studying. By the time I was in the hospital this time in 1992, I continue losing weight. They inserted a feeding tube into my neck so that I would at least get nutrition. That didn’t stave off the weight loss, however. By the time I left, I was 100 lbs. I have never looked so ill. My thighs were barely much thicker than my thighs. I once again had to withdraw from college because there was no way I was going to be able to make up three missed weeks of school.

Earlier this year when thyroid medication helped me drop about 5 lbs. quickly, I began to panic. I called the prescribing doctor and told him I was worried about the rapid weight loss. He laughed at me and told me I was the first patient to ever call him to complain. I explained that I was not complaining, but that the rapid weight loss triggered memories of when I was in the hospital. I said, “What do I do? Eat more?”. He laughed and said yes, I can eat more.

After getting off the phone with him, I realized that I have had a fear of weighing too little because of these hospital experiences. I psychologically need to have some meat on me. At this weight of around 120 lbs., any added weight can be seen in the belly area – and I am totally fine with that. But having a ultra-lean body doesn’t really work with my psyche because I want to make sure I have some weight to fall back on if I ever get sick and can’t eat, which is what happened earlier this month. But I’ll talk about that in another post.

~~ End of Part 5 ~~

Illness, Alienation, and PTSD – Part 3

Read Part I and Part 2.

Even though I liked my pediatricians, I feared the doctor’s office. I dreaded getting shots. Often, I was in the doctor’s office because of fever. I seem to remember getting a lot of them. I was also prone to terribly painful bladder infections. The getting undressed and into a robe. Feeling chilled and a bit scared while waiting for the nurse and doctor to examine me. I know readers know what I am talking about, but it’s the sheer frequency from recurrent illnesses and surgeries that had a profound affect on my sense of safety and strength in the world.

The two abdominal surgeries I had when I was eight years old occurred against the backdrop of my frequent visits to the pediatricians’ office. The fears of doctors and illness I already had became exacerbated by the extreme nature of the pain that led to my surgeries where I was necessarily and unwillingly separated from my family.  The separation felt like abandonment, even though I knew they would have been with me if they could.

The chronic exposure to the vulnerability of nakedness, illness, excruciating stomach pains, and surgeries hits you hard in to the core of your being. I learned that I could never trust my body. I didn’t realize until much later that it also meant that I could not trust my self. I learned that could not trust that terrible things would never happen to me. I  feared the future, and felt that safety is an illusion, even if I couldn’t explain it at that time.

I heard the words of comfort my mother uttered as pity, which I loathed. Somehow, I felt worse about my situation instead of better. I decided early to hide how I really felt until there really was no way I could hide it any more, just so I wouldn’t have to hear it – the sound of pity in her voice. I was terribly sensitive to the slightest change in tone in her voice, whether it be anger or anxiety. A pointed expression of fear could send me into an intense state of anxiety. I could hear her fear for my life, and I feared for my own life in response.

For decades afterwards, I had this intense desire to be physically near my friends and family at all times. I think this influenced the jealousies I felt towards friends when I saw them having what I saw as a closer relationship with each other than with me. I have no idea what they thought then. It probably isn’t true, and I didn’t ask. I wasn’t aware at the time of what drove me to have those jealous feelings.

Elizabeth Shue once appeared on the cover of Boston Magazine with the quote, “Vulnerability is my greatest strength.” But what about those of us for whom our vulnerability becomes tied in with our greatest weakness? In my case, it was my body and the feelings that I tried to bury as deeply as possible. How can I mine that vulnerability for art when it brings back the painful experiences that illness has put me through? My unwillingness to dig deep would have forced me to work through the bundle of repressed anxieties, fear, anger, and helplessness. I have worked on it with therapists over the years. But there are some things that cannot be forced.

Going back to school let me nestle myself into a routine where I could occupy my mind. But the intense anxieties I had lived barely under the surface. In one way, anxieties were ever present. In another, I tried to stuff them down deep inside and close them into a box with a lock. Ten thousand locks. My box had many leaks, and they could burst out in in fear and/or anger at any moment. An anger that was driven by a sense of helplessness and rage at the fate I had been dealt.

After my surgeries that I had when I was eight, I prayed to God and swore with all my heart that I would be a good girl if only He would keep me from ever having to go through that again. The promise became deeply embedded into my psyche. After a while, I no longer consciously remembered that promise. But there it was, subtly influencing my behavior for years to come.

~~ End Part 3 ~~