Pills… Pills… Pills…
There is a reason G-d (or was it Noah’s idea?) had the animals enter the ark in pairs, and why we humans need someone with whom to share our lives.
There are so many issues when thinking about our own health and that of a spouse. This became quite evident as I began to take care of Hubby’s every ache and pain. I have always monitored his medical care, but with his severe decline in memory, every detail now simply requires my full attention.
Hubby takes 18 pills a day. There is barely any medical condition which has eluded him in his 94 years on this earth. Each medication does its work and has done it well, for heart, blood, diabetes, digestion, anemia … the list is quite long. I recall when we first moved to London and we went to see our National Health doctor who was shocked by Hubby’s lengthy list of meds. With great bravado he proclaimed “We will get him off of all of these!” Hubby had already had two heart attacks, kidney stones and gout, thus, I was very skeptical about this doctor’s bona fides. One year later the same doctor unexpectedly passed away. He was not more than 60 years old at the time. It was really a tremendous shock. No other doctor after him ever made such a wildly irresponsible proclamation. I could not but wonder if he unfortunately had taken his own advice.
How is your mate’s health? Does he/she have a family history of strokes? Of Cancer? Of Cataracts? Of Diabetes? Of Glaucoma? Of heart attacks?
Are the answers family secrets? It has surprised me to learn that many of my friends have no idea what medications their spouses take each day. Some husbands or wives want to be in control of their own medical issues and go alone to doctor appointments, thus keeping their mates in the dark. I have never understood this. A desire for privacy, and simple machismo makes for choices which one day will probably need to change.
A friend close to me had no idea that her middle-age husband was ignoring his prostate cancer. Another had no clue that massive tumors were growing in her husband’s brain. Another knew that her husband’s close family members had all died from severe strokes, but had no idea of her husband had ever informed his doctor about the genetic history. All three men have passed away, when it is possible that sharing the secrets of their conditions might have saved them.
A time does come for most of us, when we can no longer manage our own medical care, bureaucracy, and medications. The longer we live, the more pills we find in our regimen.
For most of his lifetime, Hubby was in charge of his pills. I always did the re-ordering, but his pill-case with seven days-of-the-week-plastic sections, was his private domain. It was a weekly ritual during which he demanded “total silence” in order to focus on preparing the pills without an error. I tiptoed around him not daring to ask a question.
A few years ago, I noticed that there were repeated mistakes in the distribution of his medications. I became concerned and offered that I would take over the weekly responsibility. He was very worried that I was not up to the task. Thus, as a transition, I offered to arrange the pills, and that he could double check that I had not made any mistakes. That seemed a good compromise. Within a short time, he no longer bothered to check me but he remained very insecure about which pill was for which condition, and whether I had actually performed the task properly.
His concerns needed addressing. I devised guide sheets which we use to this very day. I have included these in our website’s resource section. They are examples of pages you might like to create as well. The Daily Schedule lists which medications Hubby is to take throughout the day, listed in order by the time of the day. Some of his medications are to be taken twice a day and need about twelve hours in between. Some should be taken before or after food, some at night for varying reasons. Some are taken every other day, or even just twice a week. This is really too much for mere mortals to remember. Changes are to be expected, so after you create the list in your computer, it can be updated and re-printed in seconds.
Then the next confusion descended. Which pill is for which physical problem? As Hubby’s memory began to be muddled, his repeated inquiries about the purpose of each pill, were causing my own brain to feel a bit jumbled as my own thoughts were endlessly being interrupted and redirected to reply to his own. Therefore, a second page was created which had the name of every pill that he was taking, and its purpose. This page is only altered when a medication is added or deleted. Once printed and in his possession, every time the questions arose, my response was always “check your list.” He then pulled out the list and could study it to his heart’s content.
Another page was designed as a weekly chart with boxes to be checked off for each of the required activities in the daily regime. This was initially created when Hubby had cancer, long before dementia. The pills and daily treatments were complex and constantly changing. Only by creating a checklist, could I get his routine and meds in order and be sure that important procedures were not omitted.
This checklist has evolved with time. As Hubby no longer could remember if he had brushed his teeth or taken a shower, he had the checklist to refer to in order to know what he should accomplish next. For years, he has enjoyed checking off items as he completed them. He felt that he had control over his life. Recently we added blood pressure to the chart, and record it every day just to keep an eye that all is stable. Having been told that there is one medication we should not give him if his BP is low, this too became a part of our daily routine. To make Hubby’s life less confusing, I wrote the purpose of each pill next to its name, which helped when he asked repeatedly. Examples of these charts/lists as guides, are provided in the resources section of thedementiadiary.com.
What started out as a logical, clear-thinking approach to help Hubby to feel in control, has now become one of his obsessions. Confused as to whether it is day or night, he sometimes checks off that he has done tasks which have not been completed. He can spend hours analyzing the chart on certain days and feels that without it he is totally lost. Throughout the day he still asks if he has had one set of pills or another. We no longer depend on his accuracy, (we keep our own check-list), as what he records may be in error. For Hubby, his clipboard is a life-line. He feels independent. He feels that he is still the master of his own fate. That is no small accomplishment for a man of his age and condition.
Of course, Hubby’s desire to keep this clipboard as an extension of his body, has its down side as well. He can ask myself or Violet to bring it to him a dozen times in one day. Having acquired it, he then requires we find him his reading glasses so that he can see the print. The two pencils which he keeps with it must always be in place or disaster looms. When the erasers are worn down, a definite panic sets in. Still, it is well worth the effort. If only I could chain it to his body, I would!
As with other important facts in one’s life, such as the day of the week, the time of day and whether it is dark because it is early morning or evening, the details of life can become very confusing to anyone suffering from dementia, and as such are reviewed over and over. When memory fails, each time the chart is available,
It is all okay. It is better to be obsessed with one’s daily routine than to feel that one has no say in one’s life. The check list creates a sense of the essence of a day. Each day has a beginning and an end with much to accomplish in the mid-day hours.
One would think that this chart would be a sufficient reminder of what needs to be done for Hubby in a given day. But the chart is for him, not for me. My cellphone alarm reminds me throughout the day that pills need to be consumed. I take pills as well, so my cellphone performs a virtual concert.
Having shared tomes of experiences with you on the subject of pills, there is one more which I cannot, in good conscience omit:
We went to a family wedding in London three years ago. Hubby was not calm even then. He was unpredictable and fast to anger. I had not yet concluded how to resolve the problem. We were with family who were witnessing my distress. It was time to set up Hubby’s pills in this confusing atmosphere. I thought I had done it correctly, but made a big mistake. I accidentally put one medication into the day twice – instead of the prescribed once. I was clearly either over-tired or over-stressed, and not focusing on the task at hand. The result was that hubby began projectile vomiting in a nearby department store, and then spent 24 hours in our hotel room, ill in bed. I only realized the next day, when I went to give him his medications once again, that there was a duplication the day before, as well as for every future day of that week.
The inclusion of the chart/lists, is provided to serve as a sample of similar guides you might like to create for a member of your own family. They relieve the care-giver from being the total source of all information at all times. That is an immense burden, and accomplishes very little when short term memory guarantees the question of the moment will be repeated again, in a few minutes time. If I were to answer Hubby’s questions over and over, it would not be as helpful as his looking at the chart to find the information for himself. Even if he sometimes spends hours analyzing the chart, it is his and his alone. No one is to interfere. Everyone needs his own domain.
Today is “Grumble Monday.” Violet has placed Hubby’s small suitcase crammed with three month’s supply of his medications on the chair next to me at the dining room table. I am facing a pill container with seven plastic sections- each containing four small compartments which need accurate filling with a total of 126 of Hubby’s pills. Little wonder that I face every Monday morning grumbling the words “pills…pills…pills!”
