As I wandered through the aisles of the thrift store one afternoon with Henry, my love of fifty-two years, and a friend who accompanied us to assist me in keeping Henry corraled, she picked up a book that became my inspiration for the journey that I had not chosen. The subject for the book was completely about dignifying a disease that can take a gracious, fun-loving, high-spirited man about town and turn him into an invalid who needs a full-time caregiver to feed, clothe and bathe.
Since my love has passed away, I have received so many comments and questions on how in the world our family is coping emotionally after losing the patriarch of our family, the man who assumed that he would be making all the decisions for us until he was much older. The man who always assured me that he would always take care of me until he died and then he would make sure I never wanted for anything. There are days I would look at Henry and silently mouth, “The joke’s on you Henry Jones. Looks like I am the one in control.” This was always hilarious because he was a man’s man. A spiritual father to sons who looked to him for training and guidance in ministry. A dad who wanted the best for his family sparing no expense. People knew him around the world as Dr. Jones, bishop, pastor and just friend.
Many times through the years, I would question his actions as he gave away an automobile or opened our home to another young person who needed stability for a while. When prompted to save money for a rainy day, Henry would always say that he was investing in the Kingdom of God, and God would always take care of us. The amazing fact about that statement is that God has always taken care of us, even when we had no idea how the funds would come or by what means.
I had no idea, when I was tagging along, while hanging on to his next vision of planting churches or traveling the world, that I would one day be the caregiver for this vibrant man who would become a silent soul who could not express himself any longer. This man who could stand for hours in the nation of Indonesia and preach, with a translator, and let that translator know that he expected him to say exactly what he was saying because he knew enough of the Bahasa Indonesian language to correct him, if necessary.
As I meet people today, after the death, I watch them sadly embrace me as though I will fall apart upon impact. It’s as though they assume I have just realized what I’ve lost. No, I knew what I was losing during this journey of dementia. So, I am not mourning daily and through the night for a lost love. I have been mourning for the last several years for the love that had swept me off my feet, the love that I had never been able to match with anyone else in fifty-two years, the love that was so strong that he stole everyone else’s thunder.
During our journey, as Henry and I would go shopping or just browsing through stores, I would overhear people wondering what to buy or where to eat. I wanted to tell them to not waste time on trivial matters. Just pack every day full of memories because your life can change tomorrow.
When the neurologist gave us the diagnosis of early onset dementia, he just threw a diagnosis out there and expected us to receive it without any questions. Of course, I have learned through the years that I want to know the details; however, with this disease, you may never find out the correct answers. Henry really never received a true diagnosis from the doctors. We lived in a world of maybes. Maybe it was vascular Dementia because he had received four stents after heart catheterization or maybe it was Lewy Body Dementia (LBD).
Most people are probably more familiar with Alzheimer’s disease (AD), as many call it, ‘Old Timer’s Disease’. Sadly, there are others. According to the Alzheimer’s Association, 60% to 80% of dementias are Alzheimer’s, but there are Parkinson’s disease with Dementia (PDD), Creutzfeldt-Jacob Dementia (CJD), Normal Pressure Hydrocephalus (NPH) and of course, Lewy Body Dementia. I remember a physician saying, “People in nursing homes either have dementia or are about to get it.” While these diseases are spoken about in terms of millions, they are about individuals, the victims themselves and the people who love them – the caregivers. These diseases are heartless to victim and caregiver alike.
Our journey through this long-winding road of dementia lasted only five years and four months after diagnosis. For other families, it can take ten to twelve years of slowly stealing the personality, character, and physical abilities away from your loved one (LO) until there is no semblance of recognition. We were so blessed to capture moments of lucidity as Henry would come back to us with an “I love you,” or “You love me, don’t you?” My days were full of praying that God would conform me to His image so I could take care of Henry as I knew he would care for me.
Until the last nine months, Henry would always recite this phrase about preaching in “Jakarta, Indonesia, Singapore, Amsterdam, London, England and Aachen, Germany.” Daughter, Kimberly, jokingly said one day, “I’ll be glad when it forgets that statement.” Later, we decided that we would love to hear that statement again. Our solace is that we do have him reciting this statement on video. We have many short videos that grandson, Cameron, have recorded through the months. Many are so touching that we haven’t even been there yet; however, they will keep Henry fresh in our memories through the years.
Dementia brutalized the vibrant man I married and stole the love of my life from me. It altered him, us and me. Even until the very end, he was absolutely gorgeous. Henry had lost about seventy-five pounds in the last five years, so his face was chiseled and lean. When he began his decline quickly, about ten months before he passed after receiving a medication from his neurologist, which sent him into the final stage of dementia, he would not shower nor shave for about two weeks. This man who had always believed that cleanliness was next to godliness became obsessively afraid to step into the shower. So, when hospice came in and began assisting me in bathing him, he would not allow us to shave around his mouth, so he had the cutest goatee and mustache. Even the nurses would brag on him and let us all know that he was the best looking patient they were treating.
Because Henry had become housebound, Amazon prime became my best friend. This shopper had learned the art of searching, capturing and ordering the right size, color and style. Then the world of returns was opened to me. I realized that, if it did not fit, was the wrong color or style, send it back. So, when Covid-19 changed the way the world did things, it entered my world. I had already learned to order and expect my surprise the next day. Even today, I receive surprises several days a week. I forget what I’ve ordered because I order so much so, when the boxes arrive, I am pleasantly surprised, especially those orders coming from China that should have arrived a month ago. Now, the problem with the China express is, this return expert is still trying to figure out the process of contacting those nameless companies in China who send products that you do not even recognize because they look nothing like the pictures that enticed you to buy one more dress, one more phone charger, one more computer keyboard.
I knew Henry needed to be comfortable in our home; however, we had people in and out most days because the CNA would arrive around 9 am to assist in his bathing and dressing. I would have been up early getting Henry’s morning smoothie and oatmeal ready before the action began. His smoothie consisted of celery, carrots, ginger, apple, kale, blueberries and bananas plus protein. I figured that, if I drank this for my health, I could not refuse this for my hubby even if his mind was sick. Of course, for the last several years, I had spent hours online listening to holistic neurologists’ podcasts on how to feed my hubby’s brain. If I had to figure dollar amounts for all the vitamins and minerals I had purchased through the years to give Henry a miraculous recovery, it would be a small fortune. I would not take back anything I have done because I sleep very well at night because I know I have no regrets.
The good news is that Henry only had one respiratory infection through our entire dementia journey. This is amazing news as housebound patients are so susceptible to any and every kind of infection. Experts say that dementia patients normally pass from complications of dementia. These complications are normally urinary tract infection (UTI) or upper respiratory infection (URI). I will always believe that all the protein smoothies, vitamins and minerals plus healthy eating are the reason Henry was able to still be up and not incapacitated until the last week of his journey.
Henry had always been a dresser. He loved his Hugo Boss suits, alligator shoes, ties and designer shirts. So, when our life began changing and I was the dresser, I knew I could not keep him in his stylish jeans and sneakers. Gradually, even his dress began evolving into jogging pants and crocs. Anything that would make the day go smoother. Even the day that pull ups became his attire was a mile setter. He did not even complain, just accepted life as it was. That was the hardest part of it all. This vivacious man who had controlled his world and everyone’s world around him was now just allowing us to determine his steps, his dress, his eating…..
I would change nothing, except maybe finding a different neurologist. Of course, I did try another neurologist that someone suggested. When we went to our appointment, I was full of excitement that I was finding an Asian doctor who would point me in the right direction for holistic and medical treatment. What I received, after Henry miserably failed the memory test, was a doctor who told me to suspend all vitamins and smoothies. My husband could not be helped and would die slowly but surely from this horrendous disease. I left his office that day so dejected and depressed. I called son, Rob, weeping because one more door was slammed in our faces. While Henry could not understand why I was weeping, he did realize that I was upset. So, I had to get a grip and “get over it” as people say. I had to put on my mask and just keep putting one foot in front of the other because faith is an action word. So, I will end this blog by letting you see why I am at peace that my sweet hubby is now with the Lord. That he no longer has dementia, can now move around as a young man, and is living in his eternal home. I am at peace because Henry is at peace.