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Living With A Spouse Struggling With Early-Onset Alzheimer’s Disease
This is my account of living with a spouse struggling with Early-Onset Alzheimer’s Disease. We are about 8 years into this. There is no known cure or known causes to date. My hope is to shed some insight and my thoughts into what may lay ahead for someone diagnosed with this type of dementia that is expected to effect a large part of the world’s population within the next 40 years. Perhaps reading about the nightmare we are dealing with may prompt someone to get treatment as quickly as possible or give someone who is already caring for a loved one, some comfort knowing that they are not, by any means, alone.
My story starts out actually, when I was a young boy growing up in the 1950’s. Ingrid Iverson or Ingie, as our whole family called her, lived right next door to us with her husband whom we never saw very much and we assumed he was bed-ridden or sick. They occupied apartment 5-F on the top floor of our five-story walk-up tenement building on East 141st Street in the Bronx borough of New York City. My brother, Billy and I, in our adolescent world mostly laughed and poked fun at Ingie’s unusual manner and constant stares of distrust and paranoia. To say the least, we had no idea what Ingie what dealing with mentally and emotionally. I’ll never forget her though because one day my mother had to go out so she knocked on the door on Apt 5-F and asked Ingie to come over to our apartment and keep an eye on one of my cousins, my sister, brother and myself until her return.
Throughout my what is now understood as A.D.D., hyper-active youth I was always a handful. I never missed an opportunity to show-off or act the part of being the “the little monster” – my oldest sister, Trishie, ten years my senior was always fond of calling me. So, to get attention, I had to act out the part – right? It’s no wonder that I am an entertainer today. My sister, although in the eighth grade, by this time already had a few gray hairs from babysitting me and playing the big sister/nanny role as best she could – like the day I was let out some ninety minutes early from kindergarten. Let go, I decided to run off with some classmates and no adult supervision. We played and ran happily unattended throughout the front and back yards of buildings in the south Bronx. Whoopee, what great fun I thought to myself, no adult or parental supervision!
When Trishie came by as she did every day on her nearby St. Luke’s grammar school lunch period to pick me up at the usual noontime; of course, I was no where to be found. Luckily, she walked up and down the streets until we found each other before the cops were called to assist in locating me. Boy, was she (and my mother) mad! I was never allowed to return to that school. Yes, I was a kindergarten drop-out! Before my mother’s return that afternoon, with Ingie on guard over us, I took my opening and got into some terrible mischief and behavior pushing all the buttons I could to enrage her. Well, unbeknown to me, Ingie had grabbed a piece of wood she found in the kitchen from a piece of the back of a chair and, when she had had enough of my behavior and without warning, swung the weapon striking me square across my back. The blow nearly took my breath away from my sixty pound frame and needless to say her swift, surprising attack brought a sudden, eerie silence over that kitchen. I will never forget that blow I received that day but I was too shocked to even cry. And, I always wondered what made that 70-something women act so very strange and violently angry. It would be forty years or more before I got a clue that, as I look back, it is likely she may very well have been struggling with.A.D..
I met my wife, Joan, at a high school dance that I did not want to attend. I got an arm twisting order from my Mother, who was not one to take no for an answer, to go and chaperon Anne Marie, my youngest sister, who was a Freshman and I a Junior. That night led a five year romance and subsequent marriage that has lasted now nearly four decades. Joan was always a straight-A student scoring 1,350 (out of 1,500) on her SAT. She followed my lead and we both attended Hunter College in Manhattan largely because it was free and all we had to pay for back then was our books. Although I was pre-med and she a history major, we shared an elected course together one semester. We were inseparable dating and her dream was to become a teacher. I wanted to perform piano and sing in pop cover show bands. Joni student-taught in the inner schools of Harlem. Moving to Atlanta in the mid -70’s, she raised our children in large part, by herself, as I followed my dream of making it big in the music business. I traveled the globe as a pianist-vocalist performing with bands in hotels and nightclubs. I was on the road a large part of the time for close to six years. In addition to growing up with an alcoholic father, this was yet another stress in her life.
Joan had a great academic resume beginning from her early days at Mount St. Ursula High School in New York City. She found a steady teaching position that lasted seventeen years before she was made Principal of Our Lady of the Assumption School in Atlanta, Ga. During her years as a teacher,on the side, Joan climbed the steps towards a Specialist degree, a Master’s degree from Oglethorpe University and finally her efforts earned her a PhD. in the year 2000 attending night classes and summer school at Georgia State University. She garnered it all through sheer determination and grit.
Shortly after losing her mother in 2002 who, by the way, also had struggled with Alzheimer’s Disease though into her late 60’s, Joan began to experience problems. The first warning or symptom, as it turned out, she noticed her penmanship was not right all of a sudden. The words she wrote were going off-line and she inherently knew that something was wrong. She sideswiped my daughter’s car in the driveway as she was backing out in day and she left her purse behind at a local grocery store on one occasion. As most people’s families responding to this type of thing we were slow, perhaps in denial, to get Joni’s problem checked out by a neurologist until a nearly very serious car accident Joan incurred in May 2003 ended her time behind the wheel of a car. Luckily, the cars and not of the car’s occupants took the brunt of the damage. She was recommended a psychologist who ran some written and verbal tests on her. She later underwent and M.R.I. and CAT Scan of her brain. When the results of those tests were analyzed there was little doubt that what Joan was a patient dealing with a non-specific progressive, degenerative brain disease – “probably Alzheimer’s!”, he said. A neurologist at Wesley Woods – part of Emory Hospital in Atlanta – confirmed the findings. Part of one of the tests Joni couldn’t correctly draw the hands on a clock like we did in kindergarten learning to tell time!
That was pretty tough news to grasp. Here is a woman who is in her prime and had just graduated two years prior with a Doctorate degree! She was a revered teacher and Principal of an Atlanta private school who loved her job and was so dedicated to the school, its students, parents and teachers. Who wanted to hear that dire diagnosis? So she valiantly and the rest of our family quietly, at first, tried to go on as if there wasn’t a problem. However, this is something you can’t hide for very long. Her co-workers were helping her all they could to get through each day. Soon everyone at school knew or suspected that Joni had something terrible. We lived 22 miles from Our day of the Assumption School where she had taught 7th and 8th grade Math for 17 years and was Principal for 12 years after that. She never wanted to live close to school and be on duty 24/7. But, under the circumstances, I knew we had to move her closer to school now. However, it didn’t matter to much because her days were already numbered.
When we first moved “in-town” form a suburb called Alpharetta, I would see her spending part of her days in the yard picking leaves, by hand, off the bushes in front of the house that fell from the large oak trees in our yard and putting them in a large yard refuse bag. she always loved the outdoors and putting in flowers after a trip to the local nursery. I remember being home with her those first days in forced retirement. She used to sit and cry on our back deck. I would try to cheer her up making lunch for her but I was not very successful. It broke my heart. She never wore the charm bracelet that the Faculty had given her at her retirement luncheon at Villa Christina. Paretns and co-workers bestowed many parting gifts. Everyone at the school was so very nice and thoughtful when it came to Joan. And, they still are.
People still stop me in the neighborhood and account to me some story they have of how Joan worked so well with them and their children years before. She made lasting impressions with parents as well as her students. I used to bring Joni to the Y.M.C.A. to walk and do some light exercises some years ago when a young man approached her and said, “Dr. Tiernan, I am a teacher today because of you!” She gave of her time unselfishly; even when she was Principal, she always spent her lunch break in the school cafeteria where she could be with the kids she loved so much. It would only be a few short years that I would need to find someone to help me during the day administer to Joan – feeding her breakfast and a good lunch – at least part of the day – so that I could do my entertainment talent consultant event sales work at my company- which I have been lucky to handle way before it was the “in thing” from my home for nearly twenty years. Patty Anderson is that special someone that I now could not do without. She is a Godsend if there ever was one. Patty loves Joan like a sister and she sees to it that her mid-day medications are taken properly and that her is kept clean and well fed when I have to out or working in the office. Although Joan no longer can walk but a few feet at time now, Patty does some limited exercises with her while she sits in her chair. Light weights to help preserve her arm strength, stretching, etc. She has helped me care for Joni now for over two years. Without her here each weekday, I couldn’t run my business and keep it afloat. I also have an alternate caregiver, Dianne, whom I rely on for weekends when I perform. She is just great with her, too.
It was just a few short years ago that I would try to cheer Joni up by taking her to dinner at a nearby favorite restaurant. She liked to eat the steak they served there. And in an effort to keep her active, I used to take her to a nearby Blackburn Park to walk for a mile or more at a time and get some fresh air. Joan was unable to take a shower by herself after just one year of her diagnosis. So I starting bathing her upstairs but she was also becoming more agitated and wouldn’t help herself to get out of the tub. We live in split level home with the master bedroom upstairs and so she recently stopped being able to climb the stairs. Patty would help her down the stairs in the mornings as I would spot at the bottom of the stairs as she descended with her. We have had to move the master bedroom downstairs so that the stairs were eliminated. We sponge bath her on most days and I can just barley get her to take a stand-up shower once a week. She no longer stands upright on her own. She takes a host of medications prescribed by her neurologist whom she sees only three times a year now. Believe me, it is a job just to keep up with making sure that we do not run out ad they are administered properly and without errors. These include: the well-known Aricept, Namenda, Lexapro, Seroquel and Ativan along with a full compliment of daily vitamins we give her in an effort to keep her a long as we can. Joan had a seizure – luckily in bed one morning before rising about a year ago. Now she takes Depakote each night before bedtime for that not to reoccur.
So, before I knew it, Joan was doing less and less and completely disabled right before my eyes and there was nothing I could do about it.. Our walks became more of a pulling contest than a walk. I would try to keep her up and moving like we had walked together so many times over the last four decades while she would hold back and resist. Saying low and under her breath the words, “no, no, no!” I have kept a journal all these years that is basically a weekly account of what we have been dealing with here. I guess it has been cathartic as much as anything else to put down what were my current thoughts and I strongly suggest to do this to anyone going through a similar experience. Since I am an event planner and entertainment sales consultant in Atlanta, I thought I would get involved and begin to raise awareness. With a lot of help, I organized three annual auction/events so far with Atlanta’s Ravinia Club, who were nice enough to offer the club to us for this effort along with Alzheimer’s of Georgia. The funds raised for awareness to early-onset Alzheimer’s disease go largely to families in need in Georgia who have a family member struggling with A.D. I am slowly losing my lifelong best friend. But, I count myself lucky to be able to give back, in the form of care, to a extraordinary woman who gave so much to me, my family and everyone she touched in her life. We are both in our 50’s! This was supposed to be the years that we would enjoy life to the fullest together. It just wasn’t meant to be. Now we are playing the hand that’s been dealt to us. When you go through something like this on a day-to-day basis, you wonder where you are getting the strength from to keep going. I have always had very strong faith in God. I am sure that He is helping me and Patty too, of course. My son Jamie and my daughter Jennifer have also been very supportive. My son Jonathan, who lives in Charlotte, NC also checks in with me fairly regularly. I pray over my wife each night before bed. I think it helps us both tremendously. My wife’s beautiful mind is slowly fading however there is still that recognition that she has when I am in her presence. I can still feel and sense it. She hears us when we speak to her also and that is a great relief for us at this time. My daughter had our fourth grand child three weeks ago and she brought Murphy over to see Joan and I this week. We placed her in Joan’s arms and she held her and I put her little head next to Joan’s lips and she was aware. It was very sweet and touching. I know that it will be even harder for Patty and I when that awareness is also gone. For now, it is all about keeping her as comfortable as possible. Joan is urinary incontinent and so we rely on over-nights 24 /7 which work great.
I hope our story is a help to someone out there who may have just been given a diagnosis similar to Joni’s. Now you have some idea of what is to come. A.D. changes your whole family’s lives forever. It takes me an hour just to get her to bed after feeding her each evening. We hope and pray they find a cure, of course, in our lifetime. However, one leading researcher at John Hopkins University Medical School I heard recently quoted that we are”decades away” from knowing how the mechanisms in the brain produce beta-amyloid proteins that actually strangle, tangle and kill off nerve cells. Here is another thought: if you are around someone at work or in the neighborhood that may need some help and is experiencing some of these symptoms, encourage them to visit a neurologist and get a diagnosis. It is a disease of denial and putting it off could make a significant difference in some people.. My wife has lost her ability to speak so one can understand her over the last three years. I want my wife, my confidant back but I know that isn’t going to happen. If you feel you that you may be at risk, you have a high stress lifestyle and you job that is taking everything out of you, try to get proper rest each night, and take daily vitamins – especially B and D. And if you are someone you know has any of these symptoms, run do not walk to your nearest neurologist and get it checked out.. My two cents on this disease as an observer, is daily exercise and walking is a great idea. In my view, sleeping 8 to 9 hours a night and eating a well-balanced diet is also a must if you are to any chance of avoiding or postponing this condition – especially if it genetically in your family tree’s history already. I am sure that there is another article coming down the road as a sequel to this one. Look for it.
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