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
