Going From Bad To Worse

As I was beginning to realize that I needed more help than I had with mom, I asked my brother if he would be willing to help out in exchange for room and board. He quickly agreed, so we sat down and discussed the situation with our mother, and how we could work things out to our individual benefits. We scheduled our times so that he would be available for mom while I was at work, checking in with her on occasion. Needless to say, mom was not too happy that he moved back into the family house. Overall, everything went well for about a month or two, and then things began to change for mom again.

Late in the year of 2005, I was just finishing up with some courses that I took in college when mom started to become more pensive over some symptoms that she was experiencing. For one thing, she was becoming more agitated and depressed about the changes in her vision. However, she was beginning to complain more about having a strange pain in her chest near the area of her pacemaker. Mom was taking various drugs at the time—for high blood pressure, estrogen, thyroid, and at least two types of heart medicines. On top of that, she also wanted to take supplements, particularly vitamin C, D, and E. Originally, I just discounted her complaints because of the medications, but also thought that there might have been some interactions with the supplements. When I could finally convince her to see her doctor, the doctor basically related the problems to the medications and the fact that she was getting old, and that was about it.

I would like to make a comment at this point about mom’s doctor. I have never really liked this doctor from the very beginning because of her apparently lackadaisical attitude toward my mom, and from past experiences that she had with my father. This doctor cared for both my mom and dad at one time. Of course, it did not help that my mom would not take her physician’s advice every time, and canceled many of her regularly scheduled visits when she really needed to be seen. Mom had a love-hate relationship with her doctor, and preferred to “self-analyze” her many issues, too. This did not make for a good relationship with the doctor, but I was also skeptical about the doctor’s true feelings and intentions. In any case, no matter what the complaint was, my mom was basically told that she was experiencing the effects of old age and not much more could be done. When mom began to complain more about the chest pains, I knew that I had to do something soon. It was one week before Christmas in 2005 that everything changed again.

I had just began what I thought would be a nice Christmas break when mom became very upset about having pains in her chest. When she finally agreed to let me take her to the ER, I never thought that we would be facing anything close to traumatic. After taking some x-rays and tests, the attending physician said that they wanted to admit mom to the hospital. It had little to do with the actual chest pains, but more to do with a urine analysis. I had to convince mom that she was going to be alright, and that they just wanted her to stay for observational purposes. So, that’s where I left her, all the while wondering what I could expect to hear.

The next day, I received a call from the hospital and was told that they had found a mass on her right kidney. They said that they could not be sure of its extent, but that it was the size of a small golf ball and only a sampling of the tissue could offer a better scenario. I was told, however, that they were hesitant to perform the biopsy because of her condition and the other implications involved, so they wanted her to stay for more tests and observational purposes. I was just stunned! Mom never complained about having any type of pain, severe or otherwise, at least nothing that could be related to a tumor.

Sudden Shock!

I did not know what to do but cry at the thought that mom might have cancer. I gathered myself together and decided to go to the hospital and see her the next day.
It was a beautiful but cold Sunday morning when I arrived at the hospital. I was still pretty shook up, and had to gather all of my strength to overcome any emotion so that I would not upset mom.

I did not immediately inform any of my family members about the situation until I could get a better understanding of what mom would be facing. When I walked into her room, the shades were drawn by the window, and the curtain was mostly closed around her hospital bed. There were no lights on, either. I came around and saw that she was sleeping, so I sat down and watched for a while. Then I decided to seek out a nurse or doctor to see if I could find out anything more about mom’s situation, only to discover that there were no doctors available to talk to. Since it was a holiday week, and a weekend, they were short-staffed and all of the senior physician’s were apparently out of town. I was told that some doctor would call me by the next day. Mom was pretty out-of-it, so I decided to go home.

Over the course of the next 4-days, more tests were taken, though it is not clear what was actually done. I was told that a bone marrow test had been done, and that it came out normal, but there was still a concern about mom’s kidneys. Mom seemed to be OK for the most part, but I soon became aware that something else was going on. Every time I came to visit her, she was usually sitting up on the side of her bed and apparently in good spirits, laughing even. However, she began to tell me about some curious things: that there was some kind of a “conspiracy” going on with her room mate’s teenage children, and also seeing strange things in her room. While it appeared that the conspiracy she spoke of was more like teenage fun to placate my mother, the basis for it was that mom was seeing imaginary, cartoon-like figures running around the room. When I tried to tell mom that she might be hallucinating, she laughed it off, claiming that they were real to her.

I questioned one doctor, who appeared to be straight out of med-school, about the hallucinations, and he indicated that they were likely due to the sedatives and medication that they were giving her. When I asked what medicines she was on, they could not give me any straight answers. That's when I started to get angry. It seemed that I was annoying them with reasonable questions, and I felt like they were giving me the run-around. At that point, I decided to pay real close attention to what was being said and done to my mother.

I later did a little research of my own and found out that the medication(s) that were causing the hallucinations, particularly anesthetics, were also negatively affecting her memory and thought processes, and likely irreversible. Little did I know then that the day mom was admitted to the hospital would be the last day that she was truly lucid, truly herself. It would be the last time that mom was "normal".

Note: Two great resources for medical information on the internet are The Merck Manual (for aging) and WebMD. They will offer answers that the medical "experts" can't or won't offer.

Between the Hospital and a Hard Place

After spending one whole week in the hospital, over Christmas no less, it was time to take mom home. She was in good spirits, but she seemed to be a bit more distant and quiet, which was totally unlike her. So, to try to cheer her up a bit, I took her to her favorite restaurant and had a good meal.

From that time onward, and any time that she had to go to an appointment or anywhere, mom required the help of a transport chair. I quickly learned what a daunting task that would be since I never really had to care for another person's personal needs before. I also realized that mom had a more difficult time walking, getting up or sitting down, and even began to require some help with her bathroom needs. Little did I know that this would only be the beginning. It was becoming more apparent that my mother was now more dependent on me for most all of her basic needs and activities of daily living.

When mom was still in that hospital, I had a lot of time to consider what could happen and what might be needed to be done under certain circumstances. While I never really considered the possibility that mom would have cancer, I knew that her health and well-being would become more of my responsibility to some extent. I began to recall the experiences that she had with her primary doctor, and the hospital that the doctor was associated with, prior to the current situation. I never much cared for or appreciated the care--or lack thereof--that mom was given in the past, so I decided to seek out another doctor and another hospital for a second opinion. Granted, most people would not even think of doing something like this with someone in their late eighties under the circumstances, but believe me, it was the best decision that I could have made. So, I had all of mom's medical transcripts transferred to another doctor and hospital for a complete re-evaluation of my mother's situation and health issues.

It really came as no surprise that the new doctor would confirm mom's original diagnosis: kidney cancer. The better news was that her new primary doctor and all of the medical staff that were working with mom were absolutely wonderful and caring people. I could not ask for anything more. She was re-evaluated for her basic abilities, re-tested and re-examined by specialists for treatment of her cancer, and finally referred to a hospice group who would work on an in-home basis.

Just a note: While it may seem that I am a bit too casual in my explanation about what was actually done, let me assure you that making the decisions that I made was not an easy task for me. I was on a roller-coaster ride with my mother's health and well-being, and I knew that I only wanted the best case scenario for her. A nursing home was not a place that I would ever send my mother to live out her days, and I promised her that I would take care of her no matter what circumstances. After all, she gave birth, raised, and cared for seven children--she deserved to have that care and love returned to her. I also made a promise to my father just before he died that I would take care of mom--it was his last request.

In the following months after that Christmas in 2005, my life went into a whirlwind. While the hallucinations had subsided for the most part, a whole new avenue was about to begin in mom's life. The hospice staff would stop in once or twice a week to check mom's vitals and see what may or may not be needed. The nurses would spend time trying to talk to her while taking her vital signs, and she would sometimes become disagreeable, even aggressive. At the beginning, mom really had no clue as to the severity of her situation, mostly because she was NOT in any real pain, and would become defensive if anyone tried to explain things to her. In fact, she sometimes thought that it was some kind of joke. For a while, she was her usual highly opinionated and sometimes cranky self who only required minimal help, unless she asked for it. As time slowly passed, however, it was becoming more apparent to her (and me) that she was changing: her memory was faltering more, her ability to converse was becoming more difficult, and she was unable to focus enough to do her beloved crossword puzzles. For most of her daily routine, she would watch television shows with a semi-blank stare and take more frequent cat-naps. Mom was slowly slipping away into dementia.

The Daily Routine

While it was nice to have some caregiver help, and mom becoming more cooperative, there were some things that at first only I would be able to do for mom. These concerned her medicines, bathroom time, and personal hygiene. If anyone thought that doing these things for a child was frustrating enough, they have no idea what it's like to do them for a parent.

Mom's daily medicinal regimen consisted of eleven prescription drugs and two supplements every day. Originally, they were divided-up between three intervals of morning, noon, and evening, but eventually had to change to twice a day because it was just so difficult to administer them. While mom still had some idea of what was going on with her, she was not always agreeable to taking medications in a graduated way. In fact, she hated it! Who wouldn't, really. For me, it was a challenge and struggle every day.

Each morning, mom would wake up and wait for me to help her to the bathroom. In the beginning, she slept on the living room couch--in a sitting position most times. For some reason, being anywhere near horizontal frightened her terribly. She once told me that when she lived on her own, she slept this way most of the time. Anyway, I would bring her the walker that she used and placed it in front of her. Then I would stand directly in front of her, carefully grab both of her hands securely, and with her help she would come to a standing position. I would have to wait a few moments for her to catch her breath and balance, and then made the slow walk to the bathroom. In the beginning, she would tell me to leave and take care of her needs herself, but later it became too difficult for her to maneuver around or try to sit down or stand up again. Since we had a "booster seat" for the commode, it made things much easier for her. I soon found out that what everyone else takes for granted is a major chore for an elderly person to do.

Once she managed to return to the living room--this was where she wanted to be, she would sit down and watch some television shows. I would then start breakfast, and prepare her morning meds. In the beginning, mom had little trouble taking a whole pill and was very cooperative about it. She would take them one at a time, have a little food, and then relax with a small cup of coffee or tea. As time went by, however, she began to fight taking any pills, so I had to resort to crushing them individually and mixing them with food or liquids. She absolutely hated it, and would sometimes spit it out. Then I would have to start all over again. This went on for a several days until I was able to find a caregiver who I could trust to help me with her needs. That's when I decided to seek a private caregiver, and one that could possibly stay overnight.

Her name was Janina, an angel sent by God! Even though it took some time for mom to get used to her, the facts were that she loved to cook ( absolutely great cook!), she did not mind cleaning, and could perform everything that was required for mom with great care and love. She also got along great with the hospice staff. My prayers were answered, at least for a short time.

What Personal Life?

As all of these events were taking place, I soon realized that mom would need to be monitored and supervised on a greater scale. It became increasingly apparent that my time away from my job would eventually be more problematic. As it was, I had already taken what was left of my vacation time from work, and had to enroll in Family Medical Leave (FMLA) in order to be available at home. While my brother, and to some extent my sister, were doing their best to help out, I knew that it would not be enough and would prove to be more taxing on their own personal lives. As it was, mom really did not want their help as much as she wanted mine. While she obviously needed to have family members around to help, mom still had issues with her other kids that she would not get over--even under the circumstances. As a result, I had the difficult and daunting task of trying to persuade mom to agree to a private caregiver.

At first, I sought the help of the hospice team, but soon found out that they could only address the medical aspects of mom's care. They really did not have the capacity to arrange for more personal care. It turns out that hospice is paid for through Medicare, and anything else is up to the family and their financial ability. So...I began the arduous task of searching for a caregiver.

I did a lot of research on the subject of care-giving, and what I found was mind blowing. All of the companies and franchises available looked great until I factored-in the overall costs. On an hourly basis, the minimums ranged from $13.00 to $17.00, which equates to $130.00 to $170.00 for a ten hour day. When I computed this on a monthly basis, it was staggering! Mom did not have much money and had absolutely no life insurance or anything that could be helpful. Since I knew that I had to do something, and soon, I decided to try out a couple of options, just to see how it might work out.

My first option was to try out the help of a friend who had a private caregiver. She was an older Slavic woman, with a thick accent, who dressed like she just came from a party. I left her alone for a couple of hours with mom. When I came back, the woman was scared out of her wits. Apparently, mom did NOT like this woman. Mom grabbed a soup ladle and chased this poor lady all around the place. Looking back, it was kinda humorous, but it was not funny to me at the time since I really hoped that the arrangement would work out.

My next option was to try out a service that was provided through a retirement community in the area. Their initial cost for the first hour of every visit was $25.00, and $15.00 per hour afterward. I really had no real choices, and I was getting desperate for help, and I knew that I would have to swallow the costs involved. I sat down and tried to seriously talk to my mother about the necessity of needing a caregiver, and eventually she gave in, though hesitantly. I decided to try it out for 5 hours a day at first, staying within distance "just in case". For every day that a caregiver was arranged, it was always someone different, which did not help matters much. Mom had her "favorites", and then there were "the others" who she really disliked and would be totally uncooperative. In one case, mom managed to slip past the caregiver, shot through the entrance door and out into a drenching rainstorm. The poor caregiver had to grab her before she ran into the street as she was screaming out at the top of her lungs that she was "being killed". While it was frustrating, I had more "talks" with mom and begged her to try and cooperate. It took some time, but she eventually gave in. I was getting scared and more exhausted by the day.

When I had some "free" time, I would go out into our yard, talk to God for help, and cry...a lot! My brother was a great help to me as a shoulder to cry on and to bounce thoughts and ideas offgof. The rest of my family could not, or just would not help out with the situation, and that was my biggest heartbreak. I thank God for the hospice staff, though. They were very caring and helpful, talking me through my more trying moments. But overall, I felt very alone.

Illinois Department on Aging: Caregiver Resource Centers

Illinois Department on Aging: Caregiver Resource Centers

Read Your History!

http://pop.org/20090122816/malthusian-delusion


"Part 2. The Malthusian Delusion and the Origins of Population Control"