Mike Hughbanks Speaking Engagement 2/23/16

I will be speaking in Kearney Nebraska on Tuesday 2/23/16 at 12:00 and then in Grand Island at 5:30. The details are below. I have also inserted the link to an Interview with Country House Residence who is co-sponsoring the event with the Nebraska Chapter of the Alzheimer’s Association. I joined the interview via Skype.


I also included the link to the Kearney Hub newspaper article from an interview we had.


When: Tue, February 23, 12pm – 1pm Where: First United Methodist Church, 4500 Linden Dr, Kearney, NE 68847, United States Hosted by: Country House and the Alzheimer’s Association Cost: Free

When: Tue, February 23, 5:30pm – 6:30pm Where: Grand Generation Center, 304 E 3rd St, Grand Island, NE 68801, United States Hosted by: Country House and the Alzheimer’s Association Cost: Free

 Speaker: Mike Hughbanks – COO at DFS in Omaha before diagnosis of Younger Onset Alzheimer’s at age 58. One hour program including Q & A.
Hosted by: Country House and the Alzheimer’s Association
More Information: Mike Hughbanks is a Peer Outreach Volunteer with the Alzheimer’s Association Nebraska Chapter. Prior to this role, he was the Chief Operating Officer at Diversified Financial Services (DFS) in Omaha. As one of three executives at DFS, Mike managed Human Resources, Information Technology, Customer Service, Project Management, and General Operations. In 2011, at the age of 54, Mike started noticing some memory and cognitive issues and in August of 2015 was diagnosed with Younger Onset Alzheimer’s Disease at 58. After the diagnosis, he and his wife made the decision to concentrate efforts moving forward on getting the word out about Alzheimer’s Disease. Mike has his own blog (omalz.com) and has been featured in many local and regional news stories. He is active with the Nebraska Chapter as a peer outreach volunteer and in early stage initiative development.
To register, call 800.272.3900 or online at http://goo.gl/forms/Yzfx4oLa5C. For more information, contact Susie Peterson, 308.520.3146 or supeterson@alz.org

Taking Control Of What We Eat.

This blog is by Debra, we made a commitment to each other to improve our diets.

Mike and I are working to reform our diets.  We think there is a lot more we can do to help lower inflammation in our bodies and in Mike’s case his brain.  There are reasons that the Mediterranean diet is looking more and more appealing.  Here’s why.

Some of the foods we are eliminating will be most of our red meat.  Most of us have read articles written about why we should eat red meat.  What I’m finding for people with Alzheimer’s is that red meat can cause iron to build up in the brain and might cause a good thing like myelin (fatty tissue that coasts nerve fibers) to be destroyed.  I’m pretty sure that Mike needs his brain to communicate as efficiently as possible.  We’ll be eating red meat once a week.

The Mediterranean diet uses more whole grains and beans to help fill in the protein slot.   I think we will be seeing more nuts in our diet as well.  Soy products, like tofu, which I love and Mike is so-so about, will be used a lot more.  Cook books have been ordered to help with flavor and texture.  I’ll let you know how it’s going as we incorporate this more into our every day eating!

Mike will be also adding pure DHA into his power beverages every day.  There are a lot of reasons to add DHA to our diets and now with the addition of Alzheimer’s to the list of reasons we have a growing reason to add DHA into both of our diets.  We’ve all read about Omega-3 fatty acids.  The DHA we ordered is vegetarian DHA, straight from the algae that the fish eat which gives us our Omega oil.  Think of salmon, mackerel, tuna, sardines, these are the fish that are rich in Omega-3.  We are going to be adding more fish to our diet but we will also be adding DHA in its pure form.

Other foods we will be eating more of include fish of all kinds, whole grains, dark leafy vegetable, low fat dairy, peppers, tomatoes, beets, ginger, turmeric, garlic, onions, olive oil, berries of all kinds and tart cherries.  Once I started looking at the Mediterranean way of cooking I could see that it incorporates most of this list.  I’m going to love it and Mike is going to learn to love it!!!

We invested some money into a Vita Mix blender.  We plan to start our day with a power drink.  Today we started with pomegranate juice, a whole peeled orange, lime and a mango.  Once we get the DHA we ordered I will be adding that to the drink.  We can add protein power as well once we fully understand what we’ve got with this Vita Mix!  Dark veggies will be added to this mix as well.  I don’t think we can eat too much of the dark leafy vegetables.

Mike might struggle with the veggie part in the beginning so if I can disguise the flavor a bit he will eat it without too much of a fuss.  I found a great recipe for garlicky white beans and kale.  It looks good to me but Mike may have a different opinion!  I think we will be making a dietary change over in baby steps!

We’ll see how he does but I’m thinking it might take a while to fully make a change over in our diet.  I can see the benefits so clearly.  Mike is very energetic about the change.  Every day we will be adding something new into our diet.  We’ll see how it goes!  I am very optimistic!  I will try to blog every so often on how we’re doing.  Giving up hamburgers may be more difficult than we know.  But we won’t know until we give it a try!

The cookbooks I’m using are authored by Paula Wolfert.  She has written nine cookbooks on Mediterranean cooking.  Paula was diagnosed with Alzheimer’s herself in 2013.  She was on the National Early-Stage Advisor Group in 2014.  I picked her books after watching a video in which she is featured.  She is an inspiration to both Mike and me for her enthusiasm to learn as much as she can about Alzheimer’s so that she could better help herself and others who have the disease.  I’m eager to get started!

Here is the link to the Paula Wolfert video that aired on PBS if you are interested.




What’s New

I can’t believe when I look at the calendar that it is Valentine’s Day. I am thankful because spring is close, but also wonder where the winter went. I spent some time preparing an outline/script for an interview Debra and I are doing with Positive Momentum for a TV Show series on Alzheimer’s Disease. When I am preparing for an event like this, I am painfully aware that it takes considerable effort to get ready to speak. In my old life at work, I would be able to multi-task daily and be able to handle meetings, make decisions immediately. It is frustrating to me that things do not come as easily now.

The last several months have been exciting. I am very deliberate about what I do and how much to get involved with. With Debra’s help, I do not let myself get overwhelmed or over commit on things. I think we have found a balance in our lives which was a difficult thing to do. In the past I tended to take on a lot of different things at once and now find that I have to prioritize and do one thing a time.

A New Early Stage Support Group started in January. This support group is for individuals diagnosed in the early stage of Alzheimer’s with several participants also Younger Onset like I am who are under the age of 65. Although I  helped setup this group, Debra and I will be participants. The meetings are setup to be educational for the first part of the meeting, then we split into two groups, the caregivers go into one room and the person with diagnosis (PWD) goes into a different room. The meetings are every other week and will end in April. We are excited about this new opportunity. I had the pleasure of speaking to most of the participants on the phone when we were setting up the group.

Partners in Aging Networking Meeting in January was another event I was asked to speak at. This group is an example of several groups in the Omaha Metro that meet periodically that represent many different businesses involved with providing care for our seniors. I typically talk for 10-15 minutes about what my life was like at work, a summary of my medical history, the process of the diagnosis, and then what my life is like today living with Mild Cognitive Impairment and memory loss. The message that I try to get across is that I want to raise awareness. I want people to know that Alzheimer’s is devastating, and that it is not just a disease that strikes the elderly.

The South Omaha Community Care Council (SOCCC) asked me to speak at their January meeting. I was amazed at the commitment, support, and dedication this group has for the South Omaha Community. I was in awe and felt very privileged to be asked to speak to this group. Their membership is a virtual Who’s Who of Omaha from businesses, education, government and health care. It was impressive.

February started with a presentation at the Joslyn Art Museum to staff members and docents on dementia and Alzheimer’s Disease. My part on the panel was representing someone diagnosed with a form of dementia. There is a very exciting program at the Museum of Modern Art (MoMA) in New York called the MoMA Alzheimer’s Project. There is a nationwide expansion of programs such as this. We are so fortunate in Omaha to have such a quality Art Museum as the Joslyn. This new program will get underway later in the year and is very exciting that individuals and their caregivers will have the opportunity to experience artwork to stimulate their senses. Music and Art have been found to be very beneficial to those in middle and late stage Alzheimer’s Disease.

Debra and I attended one of the first Early Stage Support Groups (ESSG) in Omaha to share our story last week. The ESSG’s are structured to have a beginning and ending date. The structure is not always the same as far as frequency. Some groups met monthly, others bi-monthly, but all have a defined program and sponsored by the Alzheimer’s Association utilizing trained facilitators. That being said, there are new groups being started throughout the year as new people continue to be diagnosed which is the purpose of the group. The group Debra and I visited continues to meet on their own after their group officially ended. They are a close-knit group that continues to meet in a local church. It was evident to me that there is a need for continued socialization for these groups, even after the sponsorship officially ends. We were also privileged to have Dr. Reilly from Methodist Hospital in the group.

A new program, the Early Stage Social Engagement activities kicked off last week as well. These activities are designed to get participants of existing and past support groups together for social activities. Last week we had the first event, a potluck at Faith Christian Church in Omaha. Members from different support groups were represented. Future events include a tour of local brewery, a pizza night, bowling, and miniature golf. These events are scheduled through June of this year.

Still to come, next week I will be speaking at another support group in Papillion. I will also be doing a TV interview Thursday and newspaper interview on Friday promoting a speaking engagement in Grand Island and Kearney Nebraska the following week.

The last item for this post is good news. I was nominated by the Nebraska Chapter to serve a one year term on the National Early-Stage Advisor Group. It is an honor just to be nominated. There are 12 advisors serving currently from across the nation. The process just started so we will see how it goes, but it would be a honor to be able to serve in this capacity.

I will sign off for now, as always, our goal is awareness. This blog is not as much about Debra and me as it is about making people aware of Alzheimer’s Disease. More information is available at alz.org. Please send us your comments and suggestions, we do read everything that comes into the blog.

Mike & Debra

Alzheimer’s and Sleep

Sleep is required for our bodies to function. In the book “Living Your Best”*, Lisa Snyder indicates that “Sleep is required to consolidate memories, a process that moves short-term memories into long-term storage. It is important to make sure you get adequate sleep each night and that you rest during the day if needed to restore mind and body.” You could wake up with your mind refreshed. I have on occasion, especially after a particularly restless sleep, taken a nap during the day. In “The Memory Bible”*, author Gary Small suggests power naps during the day if necessary, but they should last no longer than 30 minutes. I have suffered with Insomnia for many years now, and the only relief I have found is through medication. I take Ambien CR which is an extended release tablet. Ambien is the trade name, Zolpidem is the drug name. I have tried many different relaxation routines, even the 20 minute sleep rule. Go to bed and try to relax, do not watch TV or read a book. If you haven’t fallen asleep in 20 minutes, get up and do something else for a while, then return to bed and repeat the cycle until you fall asleep. This process did not work for me.

There are things you can do to help with sleep issues.

Diet. Certain foods should be avoided, especially late in the day. According to foundhealth.com, foods high in sugar and refined carbohydrates such as candy, energy drinks, soda, and donuts. These foods contain simple sugars and are easily absorbed which can give you a burst of energy disrupting your sleep patterns. Eatingwell.com recommends limiting alcohol to one drink per day. While alcohol can help you get to sleep, it can suppress REM sleep state. I do have a glass of wine (sometimes 2) in the evening. I usually don’t have any after 9:00. Sometimes I will have a snack such as an apple or snack crackers that triggers serotonin which can help you relax.

According to Dr. Matthew Walker of the University of California, Berkeley, “Disrupted sleep may be one of the missing pieces in explaining how a hallmark of Alzheimer’s, a sticky protein called beta-amyloid, starts its damage long before people have trouble with memory, researchers reported at the Alzheimer’s Association International Conference. It’s very clear that sleep disruption is an underappreciated factor.”  Dr. Walker presented data linking amyloid levels with people’s sleep and memory performance. “It’s a new player on the scene that increases risk of Alzheimer’s disease.”

According to Jeffrey Iliff, a brain scientist at Oregon Health & Science University in Portland. “Changes in sleep habits may actually be setting the stage for dementia. The brain appears to clear out toxins linked to Alzheimer’s during sleep. And, at least among research animals that don’t get enough solid shut-eye, those toxins can build up and damage the brain.” Iliff and other scientists at OHSU are about to launch a study of people that should clarify the link between sleep problems and Alzheimer’s disease in humans. It has been clear for decades that there is some sort of link. Sleep disorders are very common among people with Alzheimer’s disease.

Caffeine is one thing you really have to conscious of. I will occasionally have a diet soda at lunch, but never at night. I always look for caffeine free when I can. I do drink ice tea, and we drink a lot of hot tea in the winter, but it is easy to find decaffeinated tea. We drink only decaffeinated coffee.  We order our coffee from Ancora and grind it ourselves. We are so in tune with our coffee now that I was  well aware when I neglected to specify decaf at Starbucks. The result was immediate, I was very nervous and couldn’t hardly keep my hands from shaking.

Calm evenings are a must. Exercise within an hour before bedtime is not advised. I avoid watching any TV programs before bed that might cause any type of anxiety, stress, or strong emotions. Political programs, sporting events, and the news sometimes cause me to get wound up too much before bed so I avoid them.

Sundown Syndrome or sun-downing is a term I was not familiar with until recently. The phenomenon occurs late in the day as the sun sets and can cause a variety of behaviors such as confusion and anxiety. It is not a disease, but affects people with dementia’s like Alzheimer’s. The exact cause is unknown, but it has been suggested that its cause might have to do with the impact of Alzheimer’s on the brain.  I do not have this issue but when you research sleep disorders and Alzheimer’s, they are addressed in the same articles in a lot of cases. Many older adults (I don’t classify myself as older), without dementia notice changes in their sleep, it seems to be part of the aging process.

Stressful days (which fortunately doesn’t happen as often after I retired), can cause insomnia. As we age, sleep can become more erratic, Alzheimer’s complicates it even more, and stress compounds it further. If we have something to do like bills, mail, disability or Social Security paperwork, we try to do it earlier in the day. I can get agitated at some of the processes that we have to deal with.

*I made the decision with this post to start adding more resource materials that were recommended to me including websites, books, and other media. In this post, Living Your Best With Early Stage Alzheimer’s by Lisa Snyder is a book I use as a reference guide. “The Memory Bible” by Gary Small is another book that I utilize. The Websites, “Eatingwell.com“, and “foundhealth.com are sites that contain diet and nutrition information. Our coffee source is ancoracoffee.com, they are based in Madison Wisconsin.


Emotions are often difficult to deal with after the diagnosis of Alzheimer’s Disease. Some struggle with emotional extremes. Stressful situations can be difficult to deal to deal with also which can lead to times of sudden onset of tears, and also times of anger.  Grieving can be difficult also with emotions being raw and experiencing emotional roller coasters. Amazingly, stress was something that I did not have to deal with when Dad was diagnosed over a year ago with brain cancer.

As I look back now at the last year, I think about the work stresses that I had to deal with and the stress of every day living. I can’t think of a time that I felt stress associated with events surrounding Dad’s diagnosis. I remember when I had to make the call to Mom and Dad to tell them of my diagnosis. I thought it would be the hardest call that I had to make. Both Mom and Dad were reassuring, optimistic and very loving in their interaction with me. No stress involved.

Debra and I traveled to Kansas to see Mom and Dad last Sunday, Dad was deteriorating due to the cancer. We arrived Sunday afternoon for our scheduled trip. Mom told Dad that Debra and I were coming so he expected us. I went to the Care Center to see Dad Sunday night, we made eye contact, Mom and I repositioned him in bed a little, and then visited for a while in his room. He went to sleep for the night. At 4:30 in the morning Pastor Ed, Mom and I prayed together in Dad’s room, Dad had gone home. I can’t begin to describe the peace that was present in the room. The presence of the Holy Spirit in the room was remarkable. It was like Dad was being welcomed home by all the Saints in Heaven. The experience is unexplainable.

Dad taught me and my two sisters carpentry, mechanics, work ethic, and love.  I was talking about Dad with my neighbor and I made the comment that I had two brothers and two sisters. I had to explain that in Dad’s eyes his two son-in-laws were the same as sons to him. They were part of the family, not just because they are fantastic people and great husbands and fathers but because Dad loved them as deeply and he did his own children. They were special people to Dad. When Debra and I married 5 years ago, she was welcomed into the family with open arms and is also part of our special family bond. Dad loved his kids, grandkids, and great grandkids.

Dad served his county in the Army. He was very patriotic and loved his country deeply. There was always a special place in Dad’s heart for those who served, or are serving. There was definitely a special place in his heart for his grandson who is in active service today. We are all proud of him. Too often we do not say thank you to those who served and to those who are serving. H, you are special, thank you!

Dad was not a physically large man. I recall returning home from college, feeling a little cocky talking to Dad in the living room at home. Dad was noticing I had a little bit of an attitude, so he jokingly made the comment that he could still “take me”. I laughed and said, “I don’t think so”. Mom looking on as we rolled around on the living room floor, chairs being pushed out of the way by the scuffle until the wrestling match concluded. I remember looking up at Dad with my arms pinned to floor, thinking, that was not a good idea, “he is built like a rock”. I couldn’t believe how strong he was.

As a teenager, I remember sitting at the dining room table having lunch. Dad was home for a quick bite before he headed to the county on a service call. I always wondered why Dad was in a hurry when he was at work, he would literally run to his truck to head to the country to work on someone’s equipment. I asked Dad  why he ran out to his truck to go on a service call. He explained that there was a farmer out there waiting for him. His combine was broke down, every hour that he couldn’t cut wheat cost him money. Dad knew that he had to do everything he could to get the customer going as quick as he could. He instilled this work ethic in all of his kids.

If you want a good example of marriage, look at Mom and Dad. After 60 years of marriage, I can’t think of anyone that is more in love than Mom and Dad. It showed, it is incredible. Debra and I were talking to Dad several weeks ago, he wanted to make sure we knew that he was married to the most wonderful woman in the world, we agree Dad!

One of that last precious moments I had with Dad happened several weeks ago. He was laying in bed at the care center, I had just given him a hug. He looked up at me and said he was ready to go home. I told him that he wasn’t quiet well enough yet to go home. He looked at me again and repeated himself, this time with a tender look in his eyes, ” I am ready to go home”. I got it.

In the last several years, after a visit or a phone call, I remember now that Dad never said goodbye, it was either, ” I will talk to later”, or ” I will see you later”.

I will see you and talk to later Dad!







The Follow-Up Neuropsychological Exam

Anticipation about an upcoming event can be worrisome. You have the good anticipation looking forward to Christmas or your birthday as a child. Anticipation of an upcoming medical appointment can be both stressful and also can bring a feeling of hope that the outcome will be good.

The second Neuropsychological exam was December 30, 2015. I was a little nervous going into the exam. I honestly didn’t remember much about the first exam other that generalities. I went to the same clinic as I did a year ago. The Geriatric Evaluation & Management Clinic at Methodist Hospital in Omaha. I was also fortunate to have Dr. Pare again this time. In my long 4 year journey through the stokes, TIA’s, and the eventual diagnosis in August of this year, I have to say that the turning point for me was the Neuropsychological exam I had in January of 2015. My wife might not have been ready for the conclusions as indicated in her post, but what I remember were the words “A neurodegenerative process would need to be ruled out”. That is what I hung onto through the following months leading up to the diagnosis.

The results of this test were what we anticipated. I knew that my memory, reasoning, and problem solving were probably not improved. It was also noted that the May 2015 MRI indicated parietal and hippocampal atrophy greater than that expected at someone of my age which is a trademark of Alzheimer’s Disease.

The test results as compared to the prior evaluation. “A decline is observed on multiple areas of cognitive functioning, including most tests measuring speed of processing, attention span, working memory, and multiple aspects of memory functions. Results are showing multiple areas of impairment, though there is not impairment across all tests of one domain (memory is not entirely impaired at this point). Yet, noticeable cognitive decline is measured when comparing to the results of the last evaluation. Technically, results continue to be indicative of multidomains mild cognitive impairment, and etiology is now known to be Alzheimer’s disease.”

So now that we have the test results, what next? To be honest, I am not sure. We were waiting for this appointment before we decided next steps. I have an appointment with Dr. Murman on February 15. We will decide then what our plan will be for this year.

I am excited that we have a new Early Stage Support Group that will be starting on January 19, and will go through April. This will give us a chance to visit with others that are recently diagnosed, some Younger Onset such as myself which will help us process this new information. I already have several speaking engagements coming up and planning more. Along with the Alzheimer’s Association, we are working on setting up other support groups in surrounding communities as well as an additional Early Stage Group in Omaha. The Nebraska Chapter of the Alzheimer’s Association is committed and passionate about helping those diagnosed and their caregivers. I am privileged  to work with such wonderful people, they are making a difference. I will talk in a later post about the support groups and other activities that are ongoing.

I want to thank Dr. Pare for her compassion, honesty and willingness to discuss these results at length with us. Her wisdom, advice, and counsel is greatly appreciated.


Memory Loss

Memory loss is one of the first warning signs of Alzheimer’s so in this post I will give some examples of the memories I still have and what I struggle with.

I remember my high school, teachers, my first car, tying my sister to the upstairs banister and blaming my other sister (sorry sis). I remember my first kiss, thanks DC. If I go downstairs today to get three things, chances are I will forget one. It is hard to explain memory loss so I am going to give examples.

My long term memories are good, but getting fuzzy. If you were to ask me to list people I went to high school with. I could name a few. I remember my best friend G. If I look at one of my yearbooks, I recognize everyone because this memory is very visual. Can I remember interacting with everyone, not so much. I remember the pictures because I have looked at my yearbooks every few years. The memory is based on the pictures, not on personal interactions 40 years ago. I do remember getting pulled over for burning rubber out of Klepper’s with the Police Chief’s son B in the car with me!

If we watch a weekly TV series, I struggle remembering the previous weeks episode. I tend to binge watching TV series, because I can quickly relate to the transition from one episode to the next. When we watch a movie from several years ago, I sometimes enjoy it again like it was the first time. I usually realize at some point in the movie, I have seen it before.

My work life  at the end was a combination of multiple things I had to juggle on a daily basis and then the stress of wondering what I would forget to do, or do incorrectly. I worked through sticky notes, legal pads, binders, file folders, etc. In the end I realized that you had to remember to look at the legal pad or sticky note or you would still forget. Many years ago I tried a Franklin Planner but found it took too long to write down everything I had to do.  Thinking about it today, I am not sure how I did it, honestly I can’t remember, but everything seemed to get done probably because I worked with really great people.

One of the most telling incidents I recall was getting to work and walking to my office and realized that I was walking to the wrong office. My office was moved many years prior, I wasn’t even on the correct wing of our floor.

Many times I would be walking around the office talking to different people, return to my office and realize my coffee cup was no longer with me. It was found in odd locations like the rest room. Often I would leave it in someone else’s office. On many occasions I would leave my office to go talk to someone and get several offices away and stop because I couldn’t remember where I was going or who I was going to see.

Deadlines such as filing disability, COBRA, insurance paperwork would slip by if I didn’t write it down. I have become a list maker. I try to use technology when I can. I have a “ToDoList” in Microsoft OneNote. I have three categories that I list, things I need to do today, this week and this month. This works well when I remember to look at the list.

Scattered and forgetful thoughts. I was at a loss as to what to call this so here is an example. I can be typing on the computer as I am now and my mind will wander to different things. I remembered that I needed to pickup furnace filters and strapping tape at Lowe’s. I have a window of about 15 seconds to write it down or it’s gone. I will remember that I need these items later, but won’t remember that I thought about it while typing my blog.

As I have mentioned before, there is no cure or a way to slow the progression of Alzheimer’s. There is medication that helps with the symptoms. One of these medications is called Aricept. I started taking Aricept in the spring of this year and it works well for me, I will talk more about Aricept in a later blog.


Stress Management

Stress is probably one of the most difficult things I deal with, it is twofold. First I try very hard not to let myself get into circumstances that could be stressful. Second, if I do get into a stressful situation which are sometimes unavoidable, it is important that I deal with it calmly and try to end the situation as quickly as I can. Here are a few examples of situations that I can find myself in.

Work. One of the hardest things I had to do was to take early retirement. After talking to my neurologist, one thing was clear, I had to be as close to stress free as possible. There were other reasons for retiring, but from a health standpoint, this was critical.  Due to the type of work that I did, stress was present all of time. It might have been as simple as having several meetings in a row and worrying that one would run long and I would be late for the next one. Sometimes getting so nervous about it that I couldn’t sit still. We were starting a huge software upgrade of our main operating system that I would have been responsible for. That alone caused a high degree of anxiety. Worrying I would forget something, not do something right, eventually causing the project to be delayed. Challenges like these were what I thrived on 5 years ago. That was one of the things I loved about my job. I might have had on my HR hat one minute, IT hat the next, and then dealing with an Operational issue 5 minutes later. I would have grabbed onto this IT project with both hands and told people to hang on, we were going for a heck of ride.

Disability Payments. We thought we hit a snag on our disability last week which sent me into a tail spin. The disability company informed us after everything was finalized and the payments started that I needed to file for Social Security. I immediately thought the worst. They did a horrible job explaining what we needed to do. They neglected to tell me that I had to file for Disability through Social Security. Big difference! Of course, I thought the worst. This would have a dramatic impact on what I can draw at 65 when the disability payments stop. Needless to say, Debra and I were both stunned that this hadn’t been mentioned until the phone call. It was very traumatic. It was then we decided that the issues of disability was something I could no longer deal with. It was just too stressful. Debra would have to take over talking to the attorney. We are finding out it is a process that takes months and could be expensive. (Topic for a different blog. ) On days that I am dealing with something like this my BP goes up and I feel myself gritting my teeth, so antsy that I can’t sit still. Double the antsy feeling if issues come up during the evening hours, I know sleep will be difficult for me.

Sports. I noticed when I was watching the World Series or Professional football on TV and there was a bad call (in my opinion), I overreact by getting verbal and loud. I have always been very passionate watching sports, but this is a new emotion for me. Things that do not go according to plan cause me stress and anxiety bad enough that it can take hours to calm down. When watching sports now, if I feel myself getting wound up a little, I either walk away or change channels. I find myself recording the games and watching them later. It is easy to just pause and walk away.

News & Politics. Are the Republicans ever going to thin the herd of candidates? Are the Democrats going to come up with someone I like? I’m not getting political here, I’m trying to explain why I avoid news and politics. I feel overwhelmed by enormity of the media coverage, it is hard for me to overlook things like politics.  I want the quick fix and there never seems to be one. The bombings in Paris are another example of how media coverage has me dwelling on the issue for a long time and I get very emotional about it.

How I’ve learned to deal with this is with Debra’s help. We sit together every morning, she reads the paper and then gives me the condensed version and we discuss. I do get some news on the Internet but I have learned to be careful. I am usually with Debra when I am reading the stories and we are discussing it together.

Dad. As of this writing, my dad is in hospice care dealing with brain cancer. After an episode that left him hospitalized, he was moved into a care center last weekend. There were some minor transfer issues moving from the hospital to the care center in another town on a weekend. It was hard for me to deal with this. My expectation was that there shouldn’t be any bumps in the road, the reality is that my role is changing, I am not the “fixit” guy anymore. Dad’s transfer turned out fine but I was very nervous and upset about the prospect he wouldn’t have his medications, meals, and care when needed.

The Alzheimer’s in me tells me that when these things happen I have to become very pessimistic. In my mind the worst possible things will happen even though they usually don’t,  but that is where my mind goes. I become edgy, anxiety sets in and my stress level increases. This is difficult to adjust to but with Debra’s help I am learning to adjust. It is always best when I can avoid these times of stress but of course it is not always possible.

This isn’t just about disability, work, or how I deal with external pressures, issues or stressors. This is an internal struggle I deal with. I was the “fixit” guy at work, in my family, in my whole being. This was a role I carried proudly, unfortunately, I can no longer take on that role. I now struggle a great deal with learning this new dynamic of who I am. I am now dependent on others which is completely out of the norm for me.


Proclamation Day

Monday, November 9 was Proclamation Day in Lincoln NE. It was an honor to be invited to the event. Governor Pete Ricketts proclaimed November 2015 as National Alzheimer’s Disease Awareness Month, National Hospice and Palliative Care Month, National Family Caregiver Month, and National Respite Awareness Month.

The event started with a “Celebrating the Family” luncheon at the Governor’s Mansion. The speakers were Dr. Anna Fisher, Hillcrest Health Services and Dr. Stephen Bonasera, University of Nebraska Medical Center. This was my second time meeting Dr. Fisher. She is a fantastic speaker, her enthusiasm is contagious. I came away with a new appreciation for caregivers! Dr. Bonasera echoed what Dr. Fisher said, as a society and a nation, we would be in trouble if it were not for the caregivers, whether family, respite or hospice. They are definitely some of our nations unsung heroes.

Proclamation Signing. After the luncheon, we went across to the capital where Governor Ricketts signed the individual proclamations. Pictured below is Governor Ricketts, Dr. Viv Ewing, the Executive Director of the Nebraska Alzheimer’s Association and myself.


After the proclamation signing, we went outside to the Ribbon Tying Ceremony on the Care Tree that is on the Capitol lawn pictured below. Each color of ribbon represents one of the organizations, purple being the one for the Alzheimer’s Association.

Care Tree

It was a good day, beautiful weather for Nebraska in November. Thank you to the Alzheimer’s Association for including me in the event.

Ronald Regan designated November as Alzheimer’s Disease Awareness Month in 1983, some of the numbers about Alzheimer’s are surprising and scary. Along with that, I included some facts about caregivers.

  1. In 1983, fewer than 2 million Americans were diagnosed with Alzheimer’s.
  2. Over 5 million Americans live with Alzheimer’s disease today, and it is thought that this estimate could be very low because many are undiagnosed.
  3. Over 700,000 Americans 65 and older will die in 2015 from Alzheimer’s.
  4. It is estimated, without a medical breakthrough, the number of American’s with Alzheimer’s disease will rise to over 13 million by 2050.
  5. Two thirds of those diagnosed with Alzheimer’s are women.
  6. Alzheimer’s is the 6th leading cause of death in the United States.
  7. In 2015, Alzheimer’s and other dementias will cost the nation 226 billion dollars.
  8. By 2050, Alzheimer’s and other dementias could cost the nation 1.1 trillion dollars if no medical advances are made.
  9. Alzheimer’s is the only cause of death of the top 10 in America that cannot be prevented, cured or slowed.
  10. Only 200,000 Americans diagnosed with Alzheimer’s disease are under 65 at the time of diagnosis (younger-onset).
  11. There are more than 15 million Alzheimer’s and dementia caregivers. The toll it takes on these friends and family members is tremendous.
  12. It is estimated that 17.5 billion hours of unpaid care is administered by these caregivers at an estimated value to the nation of 217 billion dollars.
  13. Over half of these caregivers are children caring for parents.

These are just some of the numbers. This information is all from the Alzheimer’s Association 2015 fact sheet.