“In Sickness and In Health”…A Caregiver’s Story
“A Familiar Stranger”
March 20, 2021
My husband was born in 1948. He is the fourth of five children and grew up in North Carolina. His mother and father were educators, so John was very smart, very meticulous, and very by the book from kindergarten through college. His favorite subjects were anything Math related.
John’s first memory loss episode occurred in June 2011 during a trip to Las Vegas, Nevada, and San Diego, California. Unfortunately, the episode caused him to end up in Los Angeles, California, where I had to track him down, fly him home, then have the San Diego hotel pack up and ship his luggage. Thank God for the Barista at Starbucks in Los Angeles who helped me get him on a plane home.
Upon picking John up from the airport, I took him to the doctor, thinking he had been slipped something that caused him to temporarily lose his memory. He was tested, but no substance was found. The doctor’s initial diagnosis was that John suffered from Transient Global Amnesia, a sudden, temporary episode of memory loss that can’t be attributed to a more common neurological condition, such as epilepsy or stroke.
During an episode of transient global amnesia, your recall of recent events simply vanishes, so you cannot remember where you are nor how you got there. In addition, you may not remember anything about what is happening in the here and now. Consequently, you may keep repeating the same questions because you don’t remember the answers you’ve just been given. You may also draw a blank when asked to remember things that happened a day, a month, or even a year ago.
This condition most often affects people in middle or older age. With transient global amnesia, you remember who you are and recognize the people you know well. Episodes of transient global amnesia always improve gradually over a few hours. During recovery, you may slowly begin to remember events and circumstances. Transient global amnesia isn’t serious, but it can still be frightening, and to me, it seemed like a logical explanation for what was occurring with John.
So….life went on. Nothing was out of the ordinary…or so I thought.
Today, as I look back, things were happening right in front of me, but I didn’t know to know. You know what I mean? I did not know to recognize that maybe there was too much meat in the kitchen and the garage freezers. But, on the other hand, I love ice cream, so it was not really odd that there were three gallons in the kitchen freezer and another six to eightgallons of ice cream in the garage freezer.
John always did all of the grocery shopping, so I just figured he was making sure we were well-stocked. John loved Raisin Bran for breakfast, but 12 boxes definitely should have been odd to me. The ten cases of Gatorade did not seem out of place either because John drank Gatorade when he was doing yard work. And speaking of yard work, when I finally opened the door to the crawl space under the house, there were four brand-new lawnmowers from Sears. From 2011 to 2015, odd things were happening…but I did not know to know.
John’s next memory loss episode occurred during another trip to Las Vegas, Nevada, in March 2015. Thankfully, the people at the hotel were able to help me get him home, though this time, his luggage was lost as he could not remember where he had left it, and it was never recovered.
John began talking about people and situations from the early 1980s. He referred to me as “Paulette Ellison,” a woman he knew from his early days at EPA. There were times when John absolutely did not recognize me and, on a couple of occasions, asked to see my driver’s license, then called the police to get the “intruder” (me) out of his house. It was frightening to have my home surrounded by police officers, four outside and two inside. John called the police twice before I took his phone away at the Sheriff’s suggestion. John also referred to our grandson, PJ, who was four years old at the time, as “Martin.” Martin is John’s nephew, who was in his 30s at that time.
John’s episodes of forgetfulness were becoming more frequent. He stopped referring to me as Paulette but could not remember my actual name at all. He just addressed me as “Lady.” And to be fair, John actually never referred to me as “Darian,” except on our wedding day. After that, he always called me “Baby Girl.” But that went away too.
I had contacted the Wake County Sheriff’s Department, who was about to put out a Silver Alert because John had left the house on March 16th and had not returned as of the next morning. As I was speaking with the Deputy Sheriff, John contacted me by cell phone, and the Deputy Sheriff immediately contacted the Virginia State Troopers, who were able to locate John based on a sign we were able to get John to read. They confirmed that John had driven to Richmond, Virginia, and was involved in a car accident. And just for clarification, John’s trips to Richmond were because he attended Virginia Union University, and his barber of over 50 years was there. So that was his way of returning to the familiar neighborhood to get a haircut. That should have been the end of it, right? It wasn’t.
John got away from me again and drove back to Virginia on March 31st, where he ran out of gas and was picked up by the Brunswick County Sheriff’s Department. They realized that John was disoriented and contacted me immediately. My daughter and son-in-law picked him up, and at that point, I knew what had to be done and decided to remove his car so that he could no longer drive. I surrendered his driver’s license and sold his car.
I contacted John’s doctor, who referred him to a neurologist and had him do a CT Scan. This time, it was very clear that he was experiencing all of the signs of memory loss directly related to Alzheimer’s Dementia.
I remember clearly the grieving process that began when the doctor made the diagnosis. The doctor told me, “Your husband has Alzheimer’s.” What I heard was that the John I knew was gone and would never come back again. My grief was the same as if John had passed away. And then, I had to stop grieving and get on with the business of becoming a caregiver to this familiar stranger.
John’s doctor prescribed Namenda for him to take, but John refused to take anything, stating emphatically that there was nothing wrong with him. John’s doctor told me that I could crush the Namenda and mix it in his food. I planned to do that until I spoke with my sister Dionne, a registered nurse, about the possible side effects: Vomiting, Diarrhea, and Severe Abdominal Pain. There was no way I was going to create those issues in a man who was physically pretty healthy,except for what was going on in his brain, just to prolong the inevitable. I explained to the doctor that I didn’t want to do that, and he told me that the Dementia would just run its course. John’s deterioration is all-natural, and it is amazing and frightening at the same time to watch him go from the John I knew and loved to a familiar stranger I now have to treat like a toddler in his terrible twos.
The first thing I had to do was learn to cook. Thank God for my Momma, my sisters, Robin, and Dana, my daughter, Lexie, my best friend, Carmelita, and my sister friend Josephine. They gave me recipes and walked me step by step to prepare breakfast, lunch, and dinner.
I depended heavily on my sister, Nurse Dionne, to guide me through the clinical aspects of what I saw daily, as each day brought a new change in John’s behavior.
John has forgotten our birthdays, which are a day apart in August. He has also forgotten Christmas, New Year’s Day, Valentine’s Day, and our anniversary, which is April 8th. He stopped calling me Lady and did not talk to me at all. He just hums, so I sing and play music most of the day. I also recorded a bunch of football games, especially Pittsburgh Steelers games, because John is a huge fan, so that’s the extent of his television watching. He can watch the same game over and over again, and it is new to him each time. He mumbles as he fusses with the referees and coaches after a bad play.
I filed for a Durable Power of Attorney in 2016 and immediately took steps to lock down not only our financial house, as John had previously walked into the bank and was withdrawing money unnecessarily, but also our physical house, which meant putting deadbolts on all of the entry doors, installing cameras outside and throughout the inside of the house, including John’s bedroom and bathroom, and putting chain locks on the refrigerator and kitchen cabinets.
Prior to locking down the kitchen, I purchased some fresh shrimp from the grocery store and put it in the refrigerator, intending to cook it later. Instead, the shrimp disappeared; for me, it was out of sight, out of mind. So I forgot about it…until days later when something began to smell in the house. I thought a squirrel had gotten in the attic and died, but this smell was extremely strong, coming from John’s bedroom. I began opening drawers and, to my horror, found the shrimp in John’s underwear drawer. I’ll tell you, if you’ve ever seen or smelled rotten shrimp, it will almost make you never want to eat it again.
I also had to remove the stoppers from all the sinks because John would put the stopper in the sink, turn the water on, and let it overflow onto the floor. Thank goodness we have well water and no water bill!
It is hard to imagine how fast the years have flown by. John is worse and will eventually have to go into a facility. My cooking has improved quite a bit. I have gotten used to John not talking to me or recognizing me at all. This once impeccable dresser now comes out with his underwear on top of his pants or puts all of his clothes on at once. And guess what? I allow myself to laugh. I laugh because I think back to children being allowed to dress themselves for the first time, and this 72-year-old man is now pretty much my child who insists on dressing himself. I laugh because I know that if John were my John, he would never do any of these things. I laugh because I don’t want to cry anymore. It was crazy in the beginning, but now I just remind myself that this familiar stranger is my responsibility, and I will always do what is necessary to ensure his safety and that he has what he needs. This is the part of the wedding vows we often overlook when we say, “In SICKNESS and health, and for better or WORSE.”
It is important to recognize when something is different and act as soon as possible.
Consider writing down access codes, passwords, account information, etc., and putting it in a safe or file. Also, make sure you have a Will or some type of written instruction in place for the person who may ultimately find themselves in the position of being your caregiver. During the power of attorney process, it became extremely difficult to access information because what I needed was in John’s head, so I often had to start from scratch.
In the beginning, I was ashamed to speak about John. I did not want people to know that he was regressing. But then I began to talk and found that everyone had someone in their family who had experienced what I was going through. The information I received was very valuable and just what I needed.
Recognize that not everyone will be in a position to help, but do not let that get you down. Not everyone is able to handle watching a person they know change so drastically. And that is ok.
The Journey Continues
March 18, 2023
Interestingly, I am writing about John today, as this is his time of year. John is a CPA, and this is tax season, so normally he would be working away upstairs in his office, doing taxes, crunching numbers, and using the floor and the stair rails as a file cabinet.
Alzheimer’s Dementia has changed all of that. There is no clicking away on the keyboard, no papers lying everywhere, and no curse words every now and then when the numbers don’t add up. Well, John still has one curse word in his head but only uses it when the doctor has to do something he does not like. Tax season is definitely different now.
John and I have been together for 33 years, and 2023 marks his 11th year with Alzheimer’s. Notice I did not say that John “suffers” with Alzheimer’s, and the reason for that is John seems to be at peace. Unlike many others, John was never able to embrace nor accept his condition. It came on too fast to react or to even prepare for. But today, his demeanor is calm,and his eyes have a peaceful look.
I have a difficult time responding when people ask me how John is. See, if I say he is the same, then the assumption is that the Alzheimer’s has eased up. If I say he is doing well, then the assumption is that the Alzheimer’s has gone away. But if I tell the truth and say that John has gotten worse, people think he is laying in bed about to close his eyes. So thetruth is, John is worse, but his “worse” is worse because he is completely nonverbal, except for that one curse word to the doctor.
John’s demeanor has truly changed. He is no longer the supercharged, aggressive, outspoken, always-traveling math wizard I met in 1989. John is very laid back, and his communication is now simply human touch. His hand touches my face. His fingers rub my hands and play with my rings and bracelets. When he plays with my wedding rings, I look intohis eyes to see if maybe….but I don’t fool myself. He is pretty much like a child just playing with shiny things.
Nothing reminds John of me, but everything reminds me of him – mussels cooked in beer, tax season, BB King singing “I’m A Bluesman,” Ruth Brown singing “It’s A Real Good Day for the Blues,” the Pittsburgh Steelers, March Madness (of course John would be ticked off because Carolina did not make it in this time), the smell of meat cooking on the grill. Day-to-day normal things remind me of him, and I often long to hear his voice say “Baby Girl” and to share with him as well.
I guess we have both changed. I am so very protective of John and his privacy, as well as my own. I am careful not to “put him on display” because I know that is not what he would want.
When I spoke about John in March 2021, I referred to him as a “Familiar Stranger.” I no longer refer to him that way because I have learned “this,” John. I have learned a new way of communicating with him without using words. I have learned to step up and handle the business – his business, my business, our business. I have learned that “in sickness and health” and “for better or worse” have no expiration date.
I am no longer nervous or ashamed to speak about John and am happy to share all that I can in hopes that it will help someone else who is a caregiver to a person with Alzheimer’s Dementia. But unfortunately, there is still no cure for Alzheimer’s Dementia (I check with Nurse Dionne periodically), so my mission continues to be taking care of John, speaking on his behalf, and ensuring that he has everything he needs whenever he needs it.
I ask your continued prayers for me to continue to make good decisions where John is concerned. And please pray for John that the peace I see in his eyes is truly the peace that now envelops his life.
Thank you again for letting me share my husband with you, and know that I continue to be grateful for the support of family, friends, and new persons in this circle of love. God bless you.
Mrs. Darian W. Porter Jones
John and Darian John with daughter Lexie and grandson, PJ
