As soon as I open my eyes, roll over and check that my hubby, Henry, is sleeping well, I begin going over my game plan for the day. For the last eight months, we have had hospice nurses and CNAs coming in to assist in the bathing process and checking vitals.
This sounds like such a simple process but, unless you have tried to wrestle with my hubby who has always been in control of his world, you have no right to judge our journey. Life was going good until May of last year. Henry went everywhere with me and loved every minute of it.
In fact, when we were in the grocery store or even Marshall’s, he would stop everyone he passed to exchange pleasantries, especially if there was a child involved. I really couldn’t understand that action since he had always been a man of the world, reaching out to go-getters and world-changers. Now, he was reaching out to the babies and toddlers. I even tried to process this action by explaining that his mind was going back to the days of simple things. I really had no idea, but you know how adults are. We want to find a reason for everything. I can tell you this, in this process of Dementia journey, you will have many more questions than you do answers.
On that fateful day the last week of May last year, we had our normal six-month appointment with Henry’s neurologist which we had been doing for five years since Henry was diagnosed with early onset Dementia. He always asked the same types of questions. What is today? Who is the president? What is your address? Do you know your age? Please try to draw a clock. By now, I can tell you that, if you can’t draw a clock, you will definitely be diagnosed with this horrendous memory disease. Sometimes, I will just sit down and draw a clock by memory just to make sure that I still can do such a simple act. You see, everything gets complicated when your memory is all mixed up. Then you get anxious because you can’t answer a question. Then, of course, you can’t answer anything.
Our appointment went as normal that day. We had been going to the same neurologist for the past five years and yet had only seen him twice. We would always get scheduled with his PA so, when he said he had another medication that he wanted to give to Henry, we accepted and picked it up that afternoon. Henry was already on Namenda, of course, and Aricept. These two drugs seem to be the answer to everyone’s question, “What can make him better?” Of course, we know now, neither one of these drugs did anything to help keep my honey balanced, so eventually, we discontinued use. The new drug was Depakote, and today I cannot tell you why he was given this drug.
Henry had seemed to be progressing very slowly through the different stages of this horrible disease, so we took vacations, went to conferences and church twice on Sunday. He even accompanied me when I would teach the new members’ class at church, and loved being with the people.
One of the greatest changes was when he told me to drive because he did not want to do that anymore. Listen, this man was always in the driver’s seat if the car was moving. Most times, he drove like a maniac, always speeding and assuring me that he was taking care of business. Then, he just quit doing what he loved so much. The doctor had already told me that he should not be driving, and I was trying to figure that process out. This man had been driving since he was fifteen all over the country, so how do you tell the love of your life that he isn’t allowed to drive any longer. I thank God that Henry made that decision for himself. Not one time since that day has he even tried to get into the driver’s seat. It’s as though he never drove.
Within six weeks of taking the new medication, Henry became combative, argumentative and a very unhappy camper. Even during our daughter’s conference that July, he was difficult to manage. When he began staying up all night and never laying his head down on the bed, I knew I was in deep trouble. As much as I wanted to keep him at home with me, I knew I could not manage without sleep. We both were exhausted and it was becoming more than I could handle. One Friday, my friend, Jennifer, picked me up and drove me to different memory care homes to just take a look. In case I had to make a decision, she wanted to make sure I knew the process.
That evening I had folders of information from these different homes and, as I began reading through them, I realized I could not make such a rash decision. One that would separate my husband from his home that he loved dearly. Yet, I was doing everything possible to try to calm him down. I have been a health nut for about twenty-five years and so I was giving Henry hand fulls of nutrients throughout the day with his smoothie to feed his brain and keep those brain cells alive. I had been giving him coconut oil for years because this healthy oil will nourish the brain cells. As you can tell, I was consumed with doing whatever it took to keep my husband with me.
I woke up one morning and immediately I thought, “Check the side effects of the new medication.” Why in the world had I not already done that? When I researched the meds, Henry actions proved to be a direct result of this new medication. I talked to the pharmacist who instructed me to discontinue this immediately and call the neurologist. She informed me that Henry was allergic to this medication and so his actions were out of his control. When I called the neurologist weeping and asking for a medication that would counteract what this medication had done to him, I was told they would rather not give me anything else. When I then explained that my kids knew their dad needed something to cause him to sleep, they let me know that this would be unethical. I then realized the medical community was failing us in this journey.
When I called Henry’s primary care doctor, his nurse was so upset that we had no one to help us. She spoke with his doctor then returned our call, letting us know that we needed to call hospice. Because he was a Dementia patient, they did not know what to do. That day, I felt like I was at the end of my rope. Henry always let everyone know that, when you feel like you are at the end of your rope, tie a knot in the end and hang on for dear life. Change is coming. My change was the phone call to Southern Grace Hospice. I could not stop the tears, so everyone was subjected to a bawling wife explaining her husband’s condition. The difference with this call was I was being reassured that help was on the way.
Within two hours, a representative of Southern Grace was sitting on my couch with me as she explained the process and watched Henry and me in action. When she asked me how long Henry had been diagnosed, I answered, “Five years.” She then let me know that she had no idea how I had done this alone this long. She then explained that, if we were accepted as clients, she would have a nurse in our home the next day. Within two hours, I received the call that changed my life. We were accepted, a nurse was scheduled at our home the next day and she would prescribe medication.
The reason I wanted you to take this journey with me today is to understand the importance of help when you need it. I always thought hospice meant you were dying, and they were there to help you in the process. Now I know that my husband would not be settled in our home and at peace in the process if we had not had angels walk through our doors. Nancy, the RN, and Tamika, CNA, are two of the most compassionate people I have ever met. Remember, Henry and I have been in ministry for fifty-two years, and I can tell you that these two caregivers minister to us weekly. They have become like family and the best of friends. Guess what? They do not come alone. Our door bell rings, and it’s the chaplain or the social worker. It may be someone dropping groceries at our door. Or the carrier from the pharmacy bringing us our much needed medication. When we needed the hospital bed, the transport chair, and even the oxygen, these supplies were brought immediately. Thank you Southern Grace Hospice for choosing employees that bring Jesus to families in need!