Читать книгу WHEN DARKNESS REIGNS: - Wanda Covington - Страница 4

Finally, the news came revealing that my sister-in-law did indeed have cancer and in fact, a rare form of it. It is a heartbreaking experience to see loved ones having to face that sort of challenge where the unknown is so unsettling, and the future seems so fragile. Once a treatment plan was formulated, she began chemotherapy and later radiation in hopes of defeating the evil adversary who had unexpectantly chosen her for some seemingly random reason. I wanted so desperately to do something, anything, to bring her and my brother comfort, assurance, and encouragement, but by this point, my self-sufficiency reservoir was running critically low. All the while, my mother maintained her inner strength and positive nature and I was captivated and so internally thirsty for that kind of power and strength. I wondered where it came from and how she could be so resolute in its certainty. I began to intently listen for content and look for the source of her strength. In time, I would come to understand that my mother was providing for me in ways much more valuable than what I could offer her in terms of caregiving. Well, as the year 2017 moved forward, I did my best to adjust to all the changes and unresolved conflicts that seems to shadow me everywhere I went. I had lost all interest in socializing and on at least one rare occasion where I did attend a function, I felt very alone in that room filled with people. I looked around and to be totally honest, I believed that no one in the world had any concept of how depleted and discouraged I felt, nor did I have the energy or words to attempt to explain it. I knew it was no one’s fault that they didn’t or couldn’t understand because frankly, unless I was willing to open myself up to others, there would be no way they could know. It would have sounded very selfish for me to say that it troubled me to see everyone around me carrying on with their normal lives, enjoying themselves in a manner seemingly free from constraints. Though that’s what my mind was telling me at the time, I truly did not resent my friends for moving on because a few did try to involve me in gatherings and activities; I just could not function in those environments as the person I had morphed into. I couldn’t stop it and I couldn’t change it. I felt increasingly helpless. So, I took the easy route and stayed away from people in general unless it involved handling a need for my mother or assisting my sister-in-law if an opportunity arose.

Each new day brought on repetitious duties and intermittently, produced unexpected dilemmas as well. I had come to accept that my routine would involve at least weekly laundry duty, medication management, grocery shopping, and some of the more strenuous housekeeping functions. My mother’s legs were increasingly becoming weaker from failed vascular surgeries and a weakening heart condition was taking its toll on her too. But I wanted her to maintain as much of her sense of independence as safely possible so I would let her ride with me to pick up groceries or let her fold the laundry and make the bed. I found that those things were very important to her need to feel useful and productive. I discovered through talking with others in similar situations, with doctors, and in reading a lot of material on this topic, that if I took away all of her responsibilities, even if I was doing it to help her, then she could possibly give up all motivation to do anything because, after all, why would she if someone else was doing it. It was also believed that by keeping her mind active, her thought processes might stay a littler clearer for a little longer. Taking all her normal daily functions away could have led to her feeling a sense of depression and worthlessness. I certainly did not want that, so I found subtle ways to keep her physically and mentally engaged in household functions and activities. She was becoming acutely aware of her physical limitations and even knew that her memory was not as sharp as it once had been. It bothered her and I later heard her say that sometimes she didn’t talk because she feared that she would say something that was inaccurate or would be repeating herself unintentionally. Still and yet, her positive outlook remained and was still such an inspiration to me.

Towards the fall of 2017, somehow, I was able to maintain my new eating and walking habits and surprisingly began to lose a little weight, which was also helpful in beginning to curb the diabetes. As I started to feel better physically, I began to also want to discover and define who I was as a person in this new phase of my life. Truthfully, I had long been seeking answers to all sorts of things prior to all of this. I imagine everyone becomes a seeker of such things at varying times in their lives, but my initial seeking came in August of 2009. So, let me take you there just briefly. The one simple decision I made at that time was to merely admit that I knew something was missing from my life and I kept somehow being led in my heart and mind towards understanding how God played a role in my life. You see, my mother was a Christian and I was raised going to church, but as many teenagers and young adults do, I fell away from long-term committed church attendance. I learned the basics in church growing up, enough to know there was more, but not enough to know what the more contained. So, in the few years leading up to 2009, I began to seek the intellectual information on who people said God was and, though much of it was confusing to me, I sought the Bible to see what it said about God. I began listening to and watching different pastors on television and eventually found one, Dr. Charles Stanley, who delivered information about God in a method that made sense to me. Well, I began taking notes when I watched his program and wrote down the corresponding scriptures to match the concepts that he was speaking of. I was learning that there was a lot that I did not know or understand. I was gathering all sorts of helpful scholarly information, but I had yet to make the heart connection. Thankfully, that would eventually come during my three-year dark reign.

As the Fall months approached in 2017, Mom’s diabetes worsened, and she began to need two insulin shots per day. Up until that point, I was able to go to her house at non-specific times of the day to check on her and perform the necessary functions for that day, but with the need for regulated insulin, the dynamics of the level of care for her was getting ready to change yet again. Though the shots themselves were fairly simple to administer and my mother said she could do them herself, the reality was that she really could not because her memory had gotten to the point where she was forgetting to take her pill medications on some days so I didn’t have the confidence that she would remember to take the insulin shots either. Then she began to hide the left-over pills so I wouldn’t know she had forgotten to take them. On occasions, she would self-medicate. For example, she was still able to test her own blood sugars each morning and if the numbers were too high, she would go in the pill box and get an extra dose of the diabetes medication from another day and take that extra pill thinking it would bring the sugar number down to a proper level. This in turn, left one remaining day of the week short a diabetes pill plus her body was reeling from the varying amounts of medications being taken. Once a week, I filled her medication pill box and with approximately 9 pills a day, it became a challenge because some had to be taken only in the morning, at noon, or only in the evening and with her shifting pills around, I began to lose confidence that she was taking her medications properly. She was entering the beginning phases of more frequent doctor’s and emergency room visits, and unbeknownst to me at the time, some of those events could have been due to her having access to all of her medications without restricted limitations and taking them inappropriately due to lack of direct supervision. Those types of things had become quite problematic for me because if I tried to hide the pill bottles, she felt as though I was treating her like a child and didn’t trust her. It was very painful to think that she felt like I was demeaning her or to think that she felt resentment towards me. The administration of the medication was such a crucial task, I just could not afford to make a mistake. It became a delicate balance in learning how to help her see that the things being done were for her wellbeing. I believe on most days, she truly understood but it was becoming harder for her to accept that her life was changing, and she wasn’t in complete control of her own decisions anymore.

While on the topic of medication challenges, I feel it’s important to also tell you about the dilemmas of medication refills. As I stated earlier, once a week, I filled my mother’s medication pill box which held a 7-day supply. She took approximately on average about 9 pills daily plus the insulin shots twice daily. I was constantly having to make sure that each prescription was refilled and available to put in the pill box so there would never be a lapse of time when she was without them. That may sound like a simple task, but most of her prescriptions had different refill dates. Therefore, I was constantly at the pharmacy picking up prescriptions. Though they were on an automatic refill system, many were never in stock when they were due for refill. I then found myself having to make multiple trips back to the pharmacy to pick up the out of stock medications once they had been filled. All that being said, another issue you may run into deals with your loved one’s prescription drug plan through their insurance company. You see, my mother’s prescription plan was through a reputable insurance company but the policy was so old that it didn’t cover many of the medications she was taking and that left her with a tremendous out of pocket expense that quite frankly, was very expensive for a person on a fixed income. For example, just one of the diabetic medications she was on was almost $800.00 per month that she had to pay out of pocket. With some of the medications, I had to recontact the doctor who would and could in some instances switch the medication to a generic version or one from another class of the medication that was more affordable. However, in order to obtain an updated drug policy with her insurance company, her premiums would have tripled in cost, so the question became whether it was worth paying the exorbitant premium or just pay the out of pocket expense for the medications. Ultimately, we decided to keep her current policy, in part because her medications were always changing, and a new policy wouldn’t guarantee coverage of those medications anyway. Then to compound things more, each time that she went to the Emergency Room at the hospital or ended up inpatient, upon her release home, the hospital physician normally changed some or even many of her medications she was normally taking at home. This required that I then reevaluate all the medications she had at home and compare to the new list of medications issued upon release from the hospital and take out the old medicines if they could not be used. I then refilled the box with the new ones only to find that upon her required follow up visit within a week with her regular family physician, he would want her back on the medications she took pre-hospitalization. The whole process became quite a daunting task to say the least and this happened every time she was seen by any number of her doctors.

She had begun to necessitate the need for the services of many types of specialists in her last two or three years of life. In the beginning of that process, some of her doctors were connected with the hospital system closes to her home where she regularly went for appointments. As time went on and after having heart surgery in a larger city in a different hospital network, she needed several other specialists for her health issues. I decided at that time to change her to all specialist physicians who practiced in the same hospital network. Prior to that, the two different hospital systems she frequented, did not have connected computer systems therefore, when a specialist at one hospital needed test results or doctor’s notes from the other, it became a complicated and cumbersome process to get all of the information that the doctor needed. Moving her medical needs to the larger hospital, though it was further from home, was by far one of the best decisions made for her overall medical care. Just to give you one example of how vitally important this can be for your loved one’s care; my mother had a wonderful vascular specialist at the large hospital. During one of her visits with him, he stated that he believed she needed another vascular procedure to clean a carotid artery. However, he had no idea that her nephrologist at the time was recommending dialysis because both specialists were in two entirely different hospital networks and he had no access to those hospital records. So, if I had not been with her at that appointment to explain to the vascular doctor what the nephrologist had stated to me, he would have, with all good intentions, been ready to proceed forward with setting up a vascular surgery which could have been detrimental to her overall health. But having discovered the information concerning possibly dialysis, he made the decision not to move forward at that time. I learned quickly and early on in being a caregiver that there are some failures in the medical world regarding lines of communication between doctors who have the same patient and yet are affiliated with other hospitals. I don’t say that to be critical, I merely mention it because if you are or become a caregiver to someone with extensive medical issues, you will likely run into this sort of challenge and I hope my experience will give you at least one viable solution to explore.

One valuable tool that I developed which I found to be a lifesaver to me, was an information book that I put together and kept with me at all times. The book included the following: my mother’s basic information such as address, social security number, date of birth, copies of her insurance and Medicare cards, a copy of her driver’s license and a complete updated list of her medications. I also listed her family physician and his office name, address and phone number. I did the same for all her specialists. I had detailed information of her most recent health events and test findings that resulted from them. I kept information on all her health issues and a description of what they were, and the extent of those conditions as had been described to me by her specialists. Of course, the only way to accumulate this medical information was by being present with her when she met with her specialists. When you do, it is so vitally important to ask questions. I found that a few doctors may seem a little annoyed by that, but most are not. Let me say that even if you experience some who seem annoyed, be persistent, because you are ultimately responsible for your loved one’s care and I know you are probably like me in that you want to give them the best loving care possible. I learned that my mother, especially with the dementia issues, was in tremendous need of an advocate because, quite frankly, she could not be that for herself. I watched her during those visits and initially tried to allow her to answer the doctor’s questions, but early on, I had to gracefully intervene because when asked of her by the doctor how she was feeling, she would always reply that she was fine and not having any problems, when truthfully, she was having very specific symptoms. Therefore, the doctor was not getting any of the necessary information to accurately assess her situation. It came to the point that she didn’t fully understand the questions they were asking, nor did she know what medications she was taking. I ended up having to tactfully explain to the doctors that Mom was experiencing dementia difficulties at which point most of them were patient and caring enough to take a different and softer approach with her, but relied on me for the pertinent information they needed to develop their medical strategies for her care.

These types of situations may make you feel uncomfortable as a caregiver, as it did me, but I knew that in order to accomplish the overall goal of helping her receive the best care she deserved, sometimes I had to be her voice. As it turned out, I had found myself in an awkward position of becoming the mother to my own mother. It was a difficult transition to make, but I’ll speak more on the role reversal later in this writing. All I knew at that point in the journey of caregiving for my mother was that life was not going to stop moving forward and I had to decide either I was going to flounder about haphazardly and hope to survive each day or I could start to discover how to find contentment in my situation and perhaps even determine to have peace and find joy in the journey. As you will see through this writing, the decisions we make while on any number of paths we travel in life will have long lasting effects on our hearts and minds perhaps for the remainder of our lives. All I knew at the time was that I wanted, and in fact, needed to make the right choices for my mother and for me. Along the way, in a most wonderful discovery, I learned that I did not have to make those choices alone. I had within me the power to guide my every move and thought, but I just didn’t realize it and therefore, I didn’t utilize it in the beginning. The crafty adversary had successfully blinded me from this knowledge, but little did he know, I was getting ready to embark on a defense system that could and would disable his ability to destroy me and leave me empty.