It was a cold, grey winter night, and the ride home from Rochester to the Twin Cities was quiet, occasionally punctuated by brief conversation and tears. My wife is an optimist, and she said that right up until he said the word “Alzheimer’s”, she kept hoping it was going to be something else. She just struggled to come to terms with the finality of the diagnosis, and all that it implied. For the most part, I was just numb.
Alzheimer's Reading Room
The video and article are full of important information that every family and person that has been touched by Alzheimer's disease should know and understand.
James describes many of the changes he was undergoing as he and his family came to the realization that he was suffering from Alzheimer's disease; and, as all the other possible explanations of his memory and behavior changes were ruled out.
The article includes a detailed description of the diagnosis process and testing he went through at the Mayo clinic.
I first wrote about James in 2007.
Hi,
My name is James Smith, I am 46 years old, married for 22 years, and a father of two college-age daughters. And I have Early-Onset Alzheimer’s Disease.
Back in the summer of 2004, we were a typical midwestern family. Our twin daughters were preparing for their senior year of high school, and we were already looking at colleges. I was working as an IT Director for a global Fortune 100 company. Things were going well - I had been recently approached by a retiring Vice President in the company, who suggested I would make a good successor in her role, and was being actively groomed for that position. Part of the development process entailed taking on a role in a new division of the company with greater responsibility and span of control. It was intense and a lot of work, but also challenging and exciting.
Since our girls would be leaving for college at the same time, thus leaving us as “empty nesters”, we were beginning to plan for some of the things we wanted to do together once they were away. My wife and our daughters had always been extremely close, and raising them had been the center of our lives for the past 17 years. So I knew it would be important to stay busy in order to help soften the shock of having them both leave at once. When they are at home, our home is alive with noise and energy. When they are gone, you can literally hear the clocks tick.
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As we moved into the fall of 2004, I began to notice several changes that were happening. I had been forgetting things earlier through the year, but it began to get worse. I was starting to forget a lot of things – random things. For example, if I was working on something, and turned away to speak to someone, or answer the phone, the thing I was working on simply “ceased to exist.” When I turned back around, I had forgotten I was even working on it, and couldn’t remember what I was doing. I begin forgetting meetings, and started to have trouble managing my schedule.
If you can imagine your mind as your desk, it was as if someone was stopping by periodically and taking random pieces of paper off your desk without your knowledge. They are just gone, and you don’t remember them ever having been there. At first you think it’s you, and then at some point you realize something else is going on. Over time, more and more “pages” began to disappear.
My ability to multi-task plummeted, and this was extremely concerning, as at any one time I would have between 15 – 30 major projects in play. Time began to have no meaning – an hour and a minute felt the same. Also, I began having trouble getting a full night’s sleep. After things kept getting worse, I knew I needed to figure out what was happening, so I went to the doctor.
My doctors initially diagnosed it as possible depression. I accepted the diagnosis, and started taking the medications they prescribed. The medications didn’t change the symptoms, even after taking them for several months. Also, the doctors noted that I didn’t seem to exhibit other signs of depression.
As we moved into the winter, things continued to worsen. I began to realize that I was at risk of making a major mistake at work. Just like an airline pilot has a duty to notify someone and relinquish the controls if he feels he is no longer able to safely fly the plane, I felt I had a duty to do likewise in my job. I notified my leader, and we arranged a short-term disability leave of absence starting just after the first of the year. This was in January of 2005.
During my leave, I continued to work with my doctors, and made additional medication and dosage changes – still under the assumption the underlying cause was depression. I tried to come back from my first short-term leave, and was still experiencing the same symptoms, so I extended my leave for another month and a half. I was very open with my leaders and staff at work, and the company in turn was extremely supportive during all of this.
While all of this was going on at work, my daughters were preparing to graduate from high school. Both of them were doing extremely well, and they were ranked first and third in their class. We were preparing for the proms, graduations, open houses, and other celebrations. I felt badly during this time, because the same problems that were affecting me at work were getting in the way at home. Thus, the bulk of the work and preparation for all of these events fell to my wife. This was the beginning of a very difficult time for her, and it was about to get worse.
During the summer, after unsuccessfully trying to return to work a second time, my leaders created a special position with far less responsibility and span of control. It was something that previously I would have been able to do with one hand tied behind my back. I again tried to return in this new role, and still was unsuccessful. In fact, the symptoms began getting worse. Then sometime in July of 2005, I had a significant setback. My gait changed remarkably, and I became very unsteady. In addition, my speech worsened. I was oblivious to all of this, but it frightened my family, and they took me back in to the doctors.
And so the testing began…
I took my third, and ultimately final short-term leave from work – one from which I would never return. The testing continued over the next six months, first at the University of Minnesota, and then later at the Mayo Clinic. The tests included:
- Extensive blood and urine testing
- Spinal taps (and blood patches to fix the leaks this caused)
- MRI’s
- Neurological exams
- Balance and gait testing
- Neuropsychological exams
- More Neurological exams
- More Spinal Taps
- More Blood testing
- A PET scan (Positron Emission Topography – very high-tech).
The testing took place through the remainder of the summer, fall and winter of 2005. In September of that year, we drove our daughters to Chicago to begin their first year of college. This was an extremely difficult time for my wife. Not only was she dealing with both of her daughters leaving home at once, she also now had to face the uncertainty of what was happening to her husband and life partner of 21 years. We still didn’t know what was really taking place at that point.
The diagnostic process is a process of elimination and exclusion. You start with a huge pile of “rocks” – each representing a potential cause for the constellation of symptoms being presented. Through testing of various items, you then start eliminating various rocks on the pile one by one. For example, through the blood work that was done, they were able to eliminate copper or heavy metal poisoning, Lyme’s Disease, etc… The MRI’s eliminated things such as tumors, strokes, etc… What began to be clear to us towards the end of the testing was that through the process of elimination, there weren’t very many rocks left on the pile. And none of the ones left were very good.
In December of 2005, we went back to the Mayo Clinic for a consultation with our neurologist. By this time, we, or at least I already suspected what we were going to hear. He did some follow-up preliminary testing, and then told us his conclusion – Alzheimer’s disease. My wife burst into tears, and even though I was expecting it – I was stunned.
My wife began asking questions, challenging the diagnosis. How could he be sure? Wasn’t I too young to have Alzheimer’s? Was there a risk to our girls? Our neurologist calmly explained that at this point, Alzheimer’s was the only rock left on the table. He said that although Early Onset Alzheimer’s is relatively rare, it is not as uncommon as people think. He said he had seen people who were in their thirties who had the disease.
We asked about the possibility of clinical trials, and he said that unfortunately that there were no clinical trials for Alzheimer’s that admitted patients younger than 50 years old. He explained that there were drugs available that could help increase functioning in the early to mid stages of the disease, but that unfortunately they would not alter the underlying progression or timeline of the disease.
I believe I asked how many people eventually died of the disease, and he explained that right now, Alzheimer’s disease is 100% fatal. For people who are older (age 65 and up), they often die of something else before the disease fully runs it’s course. He explained that the timeline of the disease could run from 5 to perhaps even 20 years – depending on the rate of progression. We would just have to wait and see. I gave my consent and a blood sample for genetic testing to determine if our daughters were at risk for the disease. He then wrote a prescription for Aricept, and said he would like to see me again in a year.
Both of us knew what was left unsaid that day. We had seen my wife’s mother succumb to Alzheimer’s, and we knew of the ravages the disease perpetrated on the mind of someone who was afflicted. It was like watching death in slow motion, with a very small piece of the person’s being removed each day. I a sense, someone dying from Alzheimer’s dies a thousand deaths, and each loss of function or capability brings a new round of grief. At the very end, death is often a welcome relief. And now we knew this was what lay ahead for us.
It was a cold, grey winter night, and the ride home from Rochester to the Twin Cities was quiet, occasionally punctuated by brief conversation and tears. My wife is an optimist, and she said that right up until he said the word “Alzheimer’s”, she kept hoping it was going to be something else. She just struggled to come to terms with the finality of the diagnosis, and all that it implied. For the most part, I was just numb.
When our daughters came home for Winter Break, we made an appointment with the neuropsychologist to help break the news and answer their questions. They also struggled with the diagnosis, and it took awhile for the reality to sink in. I tried to stress that the most important thing they could do for me was to continue to focus on their studies, and not let this derail them at school. One of the biggest unknowns at this point was whether they would be genetically at risk for the disease, as the markers for many types of Early Onset Alzheimer’s can be genetically transmitted. A month later, we found out that the girls were not at risk, and all of us cried again – this time in relief.
After our daughters went back to school, we began dealing in earnest with all of the “administrative” issues we now faced. In January, I applied for benefits from my long-term disability insurance. This turned out to be a two-month process, as I did not actually receive the first check until the end of March. I also began the application process for Social Security Disability, which is a requirement to continue my disability benefits. The Social Security application process takes much longer – in my case approximately six months. I received approval for Social Security benefits in September of 2006. The paperwork involved in both processes is incredible, even for someone who doesn’t have Alzheimer’s. For someone with the disease, it is overwhelming.
In addition, we worked with our financial advisor and estate attorney to update our wills, put in place Advance Medical Directives, and draft and execute Durable Powers of Attorney. Our entire financial world has been turned upside down. My life insurance was through my company, and since the first disability leave I became otherwise uninsurable. I will now never be eligible for long-term care insurance, and yet it is now almost certain that I will need long-term care at some point. It was important to get as much of this in place while I could still contribute to the solution, otherwise I knew it would fall into my wife’s lap to deal with alone. To say we never saw this coming would be an understatement. It wasn’t even on the outer fringes of our radar screen.
We went through incredible periods of sadness in the early months of 2006. At some point, I began to feel this strong sense of “time left.” I came to the conclusion that every minute, every hour we spent feeling sad, angry, frustrated and cheated was time we were just forfeiting to the disease. It was time that we could otherwise be using to do the things we still wanted to do, and time we could be spending together in a more positive way. Also, the Aricept started to kick in, and began to make a real difference.
Some days I feel almost normal, although I try hard not to compare things to the way they used to be. That’s just a recipe for sadness and loss. Instead I work hard to focus on what I can control, and what I can do today. I took an intensive driving evaluation through the Courage Center, and passed, so I can still drive. I don’t drive much though, and usually it’s just local.
We had a woman that lived a few miles from us with Early Onset Alzheimer’s who left home to pick up someone at the airport. She somehow lost her way, and ended up in Wyoming two days later – in a small ravine about 30 yards from her car. They think she just forgot where she was going, and then got lost. She drove until she ended up down a remote gravel road in Wyoming in the middle of the night, and then got out and tried to walk. She couldn’t see where she was going, fell into the ravine, and couldn’t get out. It’s hard to imagine the confusion and fear she must have been feeling during those last few hours. I use a GPS now when I drive alone, but she is always on my mind.
Now, two years from when this all started, the girls are back at school again, and it is incredibly quiet and still in the house after my wife leaves for work. You really can hear the clocks tick. I work to find ways to keep busy, and I just have to manage my expectations about what I accomplish each day, One of the hardest things to deal with is the personal inefficiency this disease brings. Multitasking is a non-event. I constantly lose things, even in the house, and am always forgetting what it was I was going to do. I feel pretty good in the “here and now”, it’s the “yesterday” and just a minute ago” that I don’t do so well with. I guess that’s just part of the deal.
James
Source AlzInfo and MSNBC.
Original content Bob DeMarco, the Alzheimer's Reading Room