Younger Onset Alzheimer’s Disease Q&A Part 2

Yes I took another hiatus from the blog, not sure why except that my organizational skills are continuing to decline. I wanted to update our small wine cellar spreadsheet and it seems now if I have a project like that, I can’t switch to something else until I complete the first task even if it takes several days. Jumping back and forth between things is very hard.

It seems a lot of the questions I received could be broken down into two groups, disability and insurance related, and disease related specifically to the way I deal with things and what I experience. I hope some of the things I talk about are useful. It is therapeutic to me to write the blog.

I won’t speed much time on disability/insurance because I spent most of the last Q&A blog on that but I will give a quick update. I am now off of Medica Insurance as of December 1st. I was automatically enrolled in Medicare Parts A & B as of December 1 by the Social Security Administration. I still needed Part D which is prescription drug coverage. NO one offers Part D in Nebraska unless you are 65. This is yet another example of people on disability under the age of 65 being discriminated against because of their age.  I am enrolled in Medicare Complete Issued through United Healthcare. The plan that I am on now includes a prescription drug plan but it is still an insurance policy written in tandem with Medicare. The cost is less than $200.00 a month all in which is $1,050.00 cheaper that my Medica policy and the coverage is far better. This is not an easy process, people need assistance to navigate through the process. We relied heavily on the AARP. Healthcare.gov is of no use at all if your income is over 48k. You are basically thrown to the wolves.

I had a question about what my average day looks like. It hasn’t changed a lot since I left work over 2 years ago. I am doing a minimum of 2 crossword puzzles a day in the morning when Debra and I are have coffee and she is reading the paper. Of course Max is always at our side or laying on Debra’s legs.

I spend some of the day in my downstairs office working on the computer usually with Max watching or snoring as he sleeps on the floor. He always watches my activities. We try to go out for at least one walk a day which can vary from 1/2 of a mile to 2 miles. Our walks are very dependent on the weather.

 

I usually take a nap in the afternoon. Debra and I (and of course Max) spend the evenings watching TV together. I try to go to bed between 10 and 11 and usually read in bed. Due to insomnia, I have to take an extended release Ambien about 20 minutes before I want to sleep along with a Unisom and sometimes a Xanax if I am feeling any anxiety. That’s a quick glance at my day, really kind of boring. We do go out to lunch a couple of times a week. We seldom go out in the evenings any more.

The next question I will address is in regard to progression of the disease. Debra probably could answer this question better than I can but I will mention a few things. I am having to search for words more. I could explain to you the place I am talking about with all the stores west of I-680 but couldn’t find the name Westroads Mall. One of our favorite restaurants serves Mediterranean food, I sometimes call it the Mediterranean restaurant because I can’t remember the name El Basha. I can be in mid-sentence talking to someone and have to really concentrate on the words. What used to come easy is now becoming a struggle.

Another thing I will mention is spelling. I was always good at spelling. I am noticing more that my spelling is getting worse, especially doing crosswords. That’s why I started doing crosswords several months ago. I can see a word doesn’t look right, but I’m not sure what the correct spelling is. In this blog, I spelled resturarant, insonmia, perscriptions, concentate, and struggel wrong. I would not have misspelled these words 3 years ago. I have spell check on my blog but it doesn’t correct it automatically, I have to hover the mouse over the word, I try to correct it on my own.

The last thing I will mention is memory. I am noticing things that are becoming more troublesome. I have several stories that I have told over the years. One example is going out to grandma’s farm on Sunday’s after church. We would go down to the creek (crick if your from Kansas like me) avoiding the cow patties in the pasture, going to the milk barn with grandma when she milked or going to gather eggs. I can still tell the stories because by sheer repetition I remember the stories. They may be growing over the years! They really are no longer memories however, I can’t picture them or remember them anymore. What I remember is telling the story, the memory itself is gone. I do not remember what the inside of the elementary school I attended was like. I don’t remember junior high except that the choir room and the teacher that I think who’s nickname was Mr. Buzzard (real name Buzzer?) was located in the basement. I do remember something about singing the song “What will we do with the drunken buzzard (sailor)” which we got in trouble for. If I remember correctly, he slammed his hand down on the piano and stormed out of the room. If any classmates read this and remember it, please send me a comment!!!

I have bits and pieces of high school, the commons, cafeteria, where the offices were. I remember some of the classrooms, The first left (south was chemistry and biology. The west hallway I think was industrial arts. The gym to the north of the commons. The south side of the building was what I think they called the quadrangles. I remember Mrs. Carr in drama. I remember Mr. Busby in music but that could be Junior High, not sure anymore. I have all of my class yearbooks, I look at the teachers, and some of the students and don’t remember if I had a teacher in class or if one of classmates and I were friends. I do still have a couple or random memories of Gene, my best bud dragging main in my car or his. I remember dragging main once with Barney (his dad was town cop at the time), pealing out on the gravel at Kleppers and getting pulled over by Barney’s dad. I think Barney became a state trooper in Oklahoma and then moved to KC, physical therapy? I remember where Gene, Barney, and the Sherman’s lived in Anthony, but not really anyone else. Mom kept me updated about some of my classmates. I know before she passed away she was concerned about my lack of memory of some of the people I was asking about.

Grandma and Grandpa’s Wilson’s house is gone now, replaced by the livestock auction. I remember driving or riding my bike down the long lane to their house. I drove by Grandpa’s old body shop in Anthony, it was a lot smaller than I remember. I remember Grandpa eating his bread dunked in buttermilk (yuck), he loved it. Driving around the Anthony Lake is another story, no memory of it except I can still picture in my mind an old house somewhere around the lake that very run down. Haunted??? Maybe we joked about it at the time, not sure. I remember driving around with Gene and Linda M, Susan G, and a third girl I can’t put a name too. I think they all had boyfriends, we were just friends dragging main and going to the lake??

I do remember where Mom and Dad’ marker is at the cemetery. I also know where Tony D lives, I actually surprised him on my last trip to Anthony and drove into his driveway.

This is me today writing this, Debra and I decided not to have her edit. We thought it important that people see how my brain is organizing thoughts to write this blog. You will probably notice that my thoughts are more random and disorganized than my earliest blogs.

 

 

 

 

 

Glen Campbell; Dealing With Your Own Mortality

We talk about it when death happens to someone else’s family.  We talk about the horribleness of death.  We may tippy-toe into the topic of how we would like to die.  Usually it is a rather light-hearted discussion with everyone sharing their own personal death scene.  From what I can tell most don’t want to suffer and if there is a chance occurrence we’d rather go fast.  Debra talks about the topic as “death drama”.  She thinks death comes with a story and a sense of drama.  I’m not sure what I think.  The death discussion doesn’t occur around me as often anymore.  Light-hearted or not, I don’t hear it very often. Debra and I will talk about it privately but hardly ever in a crowd anymore. People already know because of my diagnosis that my days are numbered.

My Alzheimer’s is a deal changer.  I could easily come into any discussion and change the temperature immediately.  I know what a lot of other people don’t know.  I know, baring medical advances, how I’m going to die.  We will come back to this towards the end of the blog.

After hearing of Glen Campbell’s death in August of this year I decided to research other people who had Alzheimer diagnosis and other forms of dementia that had died.  I was aware of some but there were many more that I was not aware of their diagnosis.

If you are a movie fan; Rita Hayworth, Jimmy Stewart, Chalton Heston, Charles Bronson, Peter Falk, Burgess Meredith, Eddie Albert, Imogene Coca, James Dohan (for the Trekkies among us), Edmond O’Brien, Dana Andrews, Otto Preminger, Estelle Getty, Robin William, Jack Lord, Arlene Francis and many more.

Notables: Ronald Regan, Etta James, Aaron Copland, Rosa Parks, Norman Rockwell, Sugar Ray Robinson, Bill Beutel, Perry Como, Cyrus Vance,  Floyd Patterson,  Grizzly Smith, Fred Trump (President Trump’s father), Don Lane, E.B. White, Pat Summitt, Casey Kasem, Thomas Dorsey ad Barry Goldwater.  I doubt that anyone will now everyone on the lists but you should recognize at least a few names.

I was drawn to Glen Campbell’s story, especially after hearing about his farewell tour and the documentary filmed of the tour.  A little background on Glen has him born on April 22, 1936 in Arkansas.  He had eight children.  His fourth wife of 33 years, Kim, was by his side during his stage shows and all the doctor’s visits.  In other words, she was there when he was diagnosed with Alzheimer’s in 2011.  One of the doctors that was featured in the documentary was Ronald Petersen from Mayo Clinic, who I have had the opportunity to meet previously and posted a blog about that meeting.  Glen had only the best of care.

In 2012 the Campbell family announced a final tour.  Glen’s three youngest children would be in his backup band.  I mistakenly thought this was a quick tour through the U.S.  It was not a quick tour at all.  It was 151 shows.  At the end of 2012 the family made the decision to not add any additional dates in 2013.  Glen was struggling with the last few shows, which the documentary details.

The Campbell family was not bashful about allowing the cameras into their home, tour bus and on stage during the performances.  With that in mind I sat to watch the film.  I finally made the decision to watch it and I thought I had prepared myself for what I thought I would be seeing.

What I watched unfold was about this extremely talented man who had such a command of his music, it was a real gift.  Even with Alzheimer’s you can see that the guitar was part of his soul.  He played it with continued ease.  But asked to remember lyrics?  He stumbled.  They had tele-prompters to help him and he occasionally, would still get lost.  On at least one occasion he sang “Wichita Lineman” twice during the performance. One notable comment from another musician attending the performance I thought very appropriate, “It’s Glen Campbell’s last tour, probably the last time I will ever see him perform live, if he wants to sing Wichita Lineman twice, that’s just fine with me”!

Watching the frustration of the day-to-day living was hard for me to watch.  I could identify with his frustrations.  Not being able to have full command of my words is very frustrating for me.  The memory lapses that are becoming all too frequent are starting to concern me. The progression of the disease I know is happening, and at times, it is very scary. In Glen’s case, his wife, Kim, was fantastic as were his children. Although, at times, Kim did admit her frustrations and difficulties dealing with Glen.

One of the most moving parts for me to watch was when Glen and his daughter Ashley did “Dueling Banjos” during their show.  He was not using a tele-prompter for his part.  The music was there, completely part of who he was.  His memory was perfectly ingrained with his guitar. I immediately remembered how talented he was.  I grew up listening to his music.

But reality hit me at a certain point.  I realized I was only going to be able to watch this film a bit at a time.  It was too emotional for me.  I got through the first half and then took a break of a couple of days, to be honest.  I am glad I watched the documentary.  I don’t want to speak on behalf of others, but it might be hard to others who have been diagnosed with Alzheimer’s to watch it all the way through.

I am and will continue to be in awe of the courage it took for the Campbell family to share this part of their lives with us.  Just before Glen’s 80th’ birthday, Rolling Stone magazine reported that Glen was in the final stages of Alzheimer’s and was no longer communicating.  On August 8, 2017, he lost his battle with Alzheimer’s disease.

I am reminded as I watched Glen’s progression that I, too, will be going down this road.  At what time in my life will I stop recognizing my wife and my children?  At what point will I forget what the toilet is for?  When will I become unable to communicate?  I know the day is coming.  I feel fortunate that my Alzheimer’s, so far, is progressing slowly, but it is progressing.  Learning to cope with your own mortality is not easy.  Harder yet is acknowledging the strain and problems that you are going to be causing your loved ones soon.

As I come to the end of this blog I have to say I have mixed feelings.  There is an increase in research funding.  But I continue to see and hear awful stories of suffering.  I really thought I lived in a somewhat insulated world of writing my blog, and speaking at events.  I needed to see the Glen Campbell documentary to center me again and to remind me of what is going to be my family’s reality.

The initial question that I posed earlier in the blog about my death.  Unless something unforeseen would happen, I too, will become a statistic, succumbing to this awful disease called Alzheimer’s.  I know there is a lot out there that I will never know anything about, I don’t know what I don’t know.  But this is something I know. There are no survivors of this disease, yet. We all await the day that someone will be the bearer of the first “White Flower”, the first survivor of Alzheimer’s. My fervent wish is that I am still alive to see that day.

It is only appropriate to close with some lyrics from Glenn Campbell. These are the heartbreaking lyrics of one of his last songs. This was perhaps his most intimate song, released in 2014. Titled “I’m Not Gonna Miss You”, it chronicled his battle with Alzheimer’s disease.  Julian Campbell, an American music producer who co-wrote the song, told the Wall Street Journal that the lyrics came out of something Campbell said after his diagnosis: [Campbell] had a hard day of people asking him about Alzheimer’s and how he felt about it. He didn’t talk too much about it, but came up to me and said, ‘I don’t know what everybody’s worried about. It’s not like I’m going to miss anyone, anyway.’

The lyrics to “I’m Not Gonna Miss You”;

I’m still here, but yet I’m gone
I don’t play guitar or sing my songs
They never defined who I am
The man that loves you ’til the end

You’re the last person I will love
You’re the last face I will recall
And best of all, I’m not gonna miss you
Not gonna miss you

I’m never gonna hold you like I did
Or say I love you to the kids
You’re never gonna see it in my eyes
It’s not gonna hurt me when you cry

I’m never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains

I’m not gonna miss you
I’m not gonna miss you

We lost a great performer, musician, man, and father. He was not afraid to show his frailties, weaknesses, and faults due to this horrible disease. Mr. Campbell, thank you for sharing your life with us, you will be missed.

Thank you Debra for your assistance with this post. I have to say that this is one of hardest posts that I have written to date. I know life sometimes doesn’t seem to be fair, and we sometimes take for granted those around us who mean the most to us. We don’t say it enough, but in my case, I do not know what life would be like without my wife!

Mike Hughbanks & The Joslyn Art to Remember Tour

August 7, 2017 2:00 PM. Debra dropped me off at my favorite home improvement store as I was on a mission. I knew they had dimension lumber 3/8 thick and I was sure I remembered the isle it was in. As I walked through the door I heard one of checkers tell another one, “Hey Jerry, that’s him”. I glanced back to see who else was in this part of the store, no one but me. I ventured on to the location I remembered, found exactly what I was looking for. I am sure I had a smile on my face as I walked back to the same register where I walked in. I recognize the checker as a regular and she commented that she saw my picture in the paper. “I was sure it was you, I even told other employees that you were in the store”. I was surprised, it took a few minutes for it to register that she was referring to the article about the “Art to Remember” series at the Joslyn Art Museum.

Next week is the anniversary of my Diagnosis of Alzheimer’s Disease; I can’t believe it’s been two years. I’m amazed when I am out in the public how many people I talk to know someone with Alzheimer’s, an aunt, grandparent, a friend or neighbor.  As I was paying for my large $2.00 purchase, the checker commented about a relative with Alzheimer’s. While leaving the store I told the nice lady I was diagnosed 2 years ago and jokingly told her I didn’t remember what I had for lunch yesterday. I did remember however, exactly where the item of lumber was in the store and that my wife was in the car timing me and I would make it back to the car in record time! I think she knew I was joking about being timed.

Let’s go back in time to December 15, 2015. Elizabeth Chentland and Clayton Freeman from the Nebraska Chapter of the Alzheimer’s Association and I are sitting in the conference room at the Joslyn Art Museum. The idea being discussed was offering a free program to individuals diagnosed in the Early Stage of Alzheimer’s Disease. Other similar programs such as the Minneapolis Institute of Art’s “Discover Your Story” tour designed for individuals and their families in the early and middle stages of Alzheimer’s have been very successful. The Metropolitan Museum of Art (MoMA) in New York City is well known as the largest Art Museum in the United States. MoMA is also well known for “The MoMA Alzheimer’s Project”. The decision was made by MoMA in 2006, and funded by a grant from MetLife Foundation to develop a program for people affected with Alzheimer’s disease. They were one of the first museums in the country to do so. The goal is to make art accessible to people with dementia.

Sitting in the conference room in December of 2015 I have several memories. The most striking is one piece of art depicting an Indian Chief in full headdress. For some reason, maybe my southern Kansas heritage, this piece of art reminded me of my dad. At the time, dad was fighting brain cancer. Everyone at the table agreed that we shared a vision to try and make the dream of a program at the Joslyn to share art with those diagnosed with Alzheimer’s a reality. The burden of work was on the Joslyn Art Museum.  Research would need to be conducted, approvals for the program would have to be obtained, and funding the program would also be necessary. I met an individual that day that I greatly admire and is one of the shining lights from the Joslyn, Susie Severson. Susie is the Director for Adult Programs at the Joslyn. More about Susie later.

February 8, 2016. Sitting on a stage in the Joslyn Art Museum in front of over 30 docents and others from the Joslyn, my goal was to tell my story, other presenters there also to enlighten the audience about persons living with a form of dementia. I recounted the memory I had of the initial meeting the previous December sitting in the conference room, looking at the Indian Chief, remembering Dad. The presentation was difficult for me because we lost Dad to brain cancer in January. To me, looking at the piece of art and associating it with a past memory or a person was very special. A piece of art reminded me of Dad.  To this day, I remember sitting in the conference room looking at the painting of an Indian Chief. I sometimes forget what I had for lunch the day before, what I went to the basement to get, or one of the 4 items I went to the grocery for, but I remember the painting and I remember Dad.

July 23, 2017, 2:00 PM, Joslyn Art Museum. It was a good turnout at the Joslyn for our bi-monthly tour. As always Susie is at the front door to great everyone as they walk in. The tour, as always, was fantastic, a lot of interaction between the presenting docent and the audience. We do not know ahead of time what the docents have in store for us. We may be singing America the Beautiful, listening to music, or smelling the scent of a pine cone while looking at a piece of art set in a forest. The docents truly make the art come to life. The docents also do not know who in attendance have a diagnosis and who the caregivers/family members are.

The “Art to Remember” Program at the Joslyn Art Museum is one of the programs that I feel privileged to be part of since I began volunteering at the Alzheimer’s Association nearly two years ago. I could go into facts and figures about why programs like this work, but in my mind I don’t need to. I am living proof that programs like this work.  I remember when we were discussing the possibility of this program I thought, we can do this. We may not be in NYC, or in Minneapolis, however, right here in Omaha, Nebraska, we have a fantastic Art Museum, an extremely capable group of people at both the Joslyn and the Alzheimer’s Association working on the project. We can do this, and it happened.

The article in the Omaha World Herald features my favorite docent. Sharon Martin is passionate about life, art and people. She has a personal connection to Alzheimer’s as do most people. Sharon is one of the heroes of the Art to Remember tour. This program I firmly believe would not be existence today if it weren’t for the efforts of Susie Severson. Susie tends to operate in the background, she is present at the tours, silently watching, never bringing attention to herself. Susie doesn’t want the attention, sorry Susie you deserve the attention, thank you on behalf of all of us for your commitment to this program. I also want to thank Blue Cross Blue Shield of Nebraska for funding the program.

That’s all for now, if you missed the article in the Omaha World Herald, the shortcut is below.

Joslyn Art Museum

 

 

Debra’s Perspective: Learning To Cope

Several weeks ago, there was a letter in our local paper asking the advice columnist her advice.  Her husband had had surgery on his brain.  The tumor was not cancerous and for that she was thankful but her husband is now different.  Not a lot different but enough so she knows he is not the man she had married.  She was still going to work every day, she was going about life much as she had done before.  But she had a feeling of dread upon going home and felt she was depressed.  Why was she feeling this way and what on earth could she do about it?

Following my father-in-law’s brain surgery, my mother-in-law was later talking to me about the differences she noticed as she walked into the house for the first time, by herself, after all she had gone through with Roger’s illness.  Betty and Roger had lived in the same house for more than 40 years.  “It all looks the same, doesn’t it?” I asked her.” Yet it’s all wrong. You can’t see it but it’s everywhere.  It’s surrounds you.”  I have been through that very thing twice in my life.  The differences I felt at the time were so profound and yet at the same time invisible.  I had asked Betty if she had felt the same way.  Her answer was, “Yes.”  I would guess if the woman from the advice column felt the same way, she too would have said yes.

I think many of you reading this post will know exactly what I’m talking about.  The moment you walk into your house after the Alzheimer’s diagnosis.  It’s all different because life is now very different.  What is it I’m talking about?  It is everything you see, every odor you smell, every noise or whisper you hear, it is in the air. It is all encompassing.

I knew life would never be the same, but I didn’t have time to sit and think about it too much.  I knew life wasn’t ending, Mike is still here, and I’ve learned through past experiences, coping skills are going to be required.  Life was all the sudden very different and our future was not going to be what we had hoped for.  But we still did have a future, didn’t we?  The feelings were all jumbled up and mixed around because we still do have a lot of joys and laughter in our lives.  Somehow even with Alzheimer’s we still laugh and enjoy our lives.  The juxtaposition can be very stark.

Pauline Boss has two excellent books about this very thing.  “Ambiguous Loss” and “Loving Someone Who Has Dementia.”  I highly recommend reading both books but the second book really speaks well to our needs.  Ms. Boss has a very clear and concise way of helping us ride the wave of unclear loss.

Several years ago, I was married for about six months to Steve.  I had come home from a church meeting and within minutes of arriving home he collapsed to the sofa. He was taken out of the house barely breathing and was soon to be in a coma.  Lots of things happened between his collapse and my very wrong notion that if he was still alive he would be okay.  I came to understand he was without oxygen for at least eight minutes.  Eight minutes is a very long time for your brain to be without oxygen.  He sustained severe brain injury.  Coping with the life altering decisions at that time was a huge challenge. Steve was never going to be the Steve I knew ever again.  I didn’t know what I didn’t know.  But I was sure going to be finding out.

I had a similar feeling when we were told Mike had Alzheimer’s.  Of course, I knew this was a disease happening to Mike and my heart lies with this man.  At the same time, I had a very human impulse morphing into hard-drive.  I could only think about myself.   How I was going to cope with another marriage changing because of something outside of our control.  I was once again called on to find a way to balance two very different skills of living my life co-existing at the same time.

Ms. Boss explains it this way, “Of all the losses experienced in personal relationships, ambiguous loss is the most devastating because it remains unclear, indeterminate.”  Think about the woman I referred to in the beginning of this blog.  Her husband is there at home, his appearance was still the same…and yet…. life did not feel the same.  There was a laundry list of items he could no longer manage by himself and yet there were many things he could still do on his own.  She kept coming back to this, “My husband is still alive, I shouldn’t be complaining but….”   Her question was ultimately, “What’s wrong with me?”  Her husband is still alive so what’s there to grieve?    In my experience, she needs to have someone help her find her way through the next steps of her life.  She has some very difficult experiences ahead of her that will be hard to manage on her own.  She’ll have to co-exist with grieving and living for a while as she is coping with her husband’s changes.

Some of us like to speak of “closure “when talking about grieving a loss.  It wouldn’t be surprising if some very good-natured friends and relatives have told the woman all she needed to do was to find a sense of closure with her past.  Put that part of your marriage on a shelf and just move on.  How can she do that when her husband is sitting right there with her for dinner every night?  Closure is too hard of a task when it comes to a loss of this nature.

Along with Ms. Boss, I don’t like the term closure because it boxes us in to time limit.  Do we grieve a death of a loved one in three weeks and then it’s time for closure? Maybe some will think since we have three days off work after a loss we should be done with the grieving?   How about a divorce?  Two weeks?  How about losing your job of 20 years?  One week? We can be tough on ourselves.  I would love it if I never heard the word “closure” spoken ever again!

The losses I am talking about are indeterminate, with no real definable time limit.  These losses are very personal and hard to navigate through by yourself.  I will say this again, closure is too harsh.  We need to think of coping skills, not closure.  If I were forced to think about closure and Mike’s Alzheimer’s it would something way off into the future.  It isn’t even practical to think about closure now.

Now that we know that dementia is an “Ambiguous Loss” we can start to learn what to do to cope.   This is very challenging.  You will need a team to help you navigate through all of this.

Here is a snap shot of what I’ve done in the past and what I am starting to do with Mike and our situation.  I hope to talk more about self-care as time goes on.  Let me know if there is more you’d like to hear.

I’ve had very good therapy as I navigated through Steve’s illness.  I’m sure I will rely more on this kind of help as time goes on with Mike’s Alzheimer’s.  I would have been lost without my therapist.  She had such a clear head and could calmly talk me through the life I was living and how to learn to cope with it.

It takes a village.  I never forget this phrase…ever.  Right from the onset I knew Mike was going to need way more interaction with people than what I could give him. I needed the neighborhood to be in the loop of information upon his diagnosis.  I understood how our neighborhood worked, we all watch out for each other.  It would be noticed if Mike was no longer leaving for work each morning.  We were very up front with everyone in the neighborhood from the start.  We have great support within reach and I have relied on that structure more than once.  Mike seems to be our “mayor” these days.  He and our dog Max, take a long walk every day, sometime twice a day.  They keep their eye on what’s happening in our neighborhood.  Our neighbors have come to rely on Mike’s updates!  He finds lots of people to chat with and that makes me happy!

Our families have been with us in every way possible.  As time goes on I know Mike’s son and daughters will become more and more involved with his care.  It is a loving and gracious relationship that is a joy to be part of.

I have learned in the past to let some things go. I’ve been called naïve, aloof, uncaring, but I’ve had to learn to let some of the stuff float away.   At some point, you will have to take stock of what is important in life and what must be let go of. I had to learn to live in the moment which can be easier said than done.  We live in a world that likes to make plans.  Plans don’t always work out.  More coping skills will be necessary for me in the future.

If Mike is having a tough day I ask him if he realizes what is going on with him.  It’s usually is a “no”.  In which case, I must remember it is the disease and not Mike.  We power through those moments.  Probably will be more days like this in the future.  He struggles with things that make him angry.  It gets harder and harder for me to sit through his tirades.  What comes out of his mouth is not the Mike I fell in love with years ago.  It is a balancing act and can be very challenging.  More coping skills are needed here as well.  These are the type of days that I need to do some rescheduling around.  They aren’t good days for Mike and I know this about him.  Plans are changed and that’s okay.

Loving and caring for someone with Alzheimer’s creates a huge duality.  I am grieving the loss of my husband and what Alzheimer’s has and will do to him while still caring for the man I married.  It is the elephant in the room, literally, it cannot be avoided.  Somehow as time goes on I will have to embrace this knowledge more and more. I will be finding new ways of coping with this duality as time goes on.  It will be a continuous job for me.

I hope to write more on this topic.  As care givers, we need lots of support and if I can ever be of any help to anyone all you need to do is ask!  I will help as best as I can.

Take care,

Debra

 

Younger Onset Alzheimer’s Disease Q & A Part 1

Sorry for the delay in answering emailed questions. I had several questions about the same issue so I will address the most common themes.

Social Security Benefits and Social Security Disability for good reason confuses a lot of people. Debra and I have had a huge learning curve once I left work and went on disability.  I had email comments such as, “you can receive social security, the Alzheimer’s website says so“, “you can get disability insurance and social security at the same time”, and “at least when you turn 65 you will be able to start getting social security to supplement the disability”. Also I had one individual who assumed that disability income was not taxable.

Unfortunately, all these premises are wrong. I will try to explain the events as we know them in our case. There are a lot acronyms used below, it is easy to confuse them.

First, the Alzheimer’s website explains that there is a “Compassionate Allowance Initiative” that is supposed to expedite the application process to receive SSDI (Social Security Disability). An important note here, this is NOT Social Security Benefits you receive when you reach retirement age, this is Disability.

I am still eligible for Social Security Benefits when I turn 65. The amount I will receive was “locked” when I left work on disability since I was no longer contributing to FICA (Federal Insurance Contributions Act).  Disability income will not reduce the eventual Social Security amount.

What we were told by the Social Security Administration and what you can be read on-line varies greatly. It can be confusing during a time of great stress with an Alzheimer’s diagnosis.

We were told by both private legal counsel and the SSA to utilize an organization called the Social Security Advocates For The Disabled (SSAD). They are independent of the SSA, and are not affiliated with any government entity. They worked as our advocate.  They filled in forms and took care of our needs as they came up.  Instead of doing this work ourselves we hired SSAD.  Their fee is 25% of the recovered disability amount owed or $6,000, which ever is lower.

That meant when I applied for SSDI, and it was approved, it would be retroactive to my initial disability date. Let’s say the disability date was in May of 2015 and SSDI was approved in October of 2015, I would get SSDI back to May of 2015 in a lump sum, minus the 25% for SSAD.  Utilizing SSAD is supposed to prevent mistakes that could cause your application to be denied, or could cause a back up for approval. The application process is extensive.

Your Social Security Statement will give you the information you need about receiving disability.  For example, Debra was a stay-at-home mother for many years and she would not be able to receive disability because she did not contribute to the system.

I hope that is clear, it is not an easy concept, it is much more difficult than it should be. If you need further clarification, send me a note.

You can’t get SSDI and SS at the same time. SSDI is intended for individuals who are disabled before they are at retirement age. My SSDI will convert to SS when I reach 65. You cannot apply for SSDI if you already receiving SS benefits.

Everyone regardless of their age should look at their SS benefit statement. You can setup up a SS account online at SSA.gov if don’t want to wait for the annual statement. People mistakenly depend on SS for their soul source of retirement funds.  Your SS benefits are dependent of what you have paid in over your employment history. My benefit is a little over $2,000 a month for SSDI and will be approximately the same when it converts to SS when I turn 65.  What you receive at retirement (65) is NOT a percentage of your last reported annual income. Not everyone is eligible for SS benefits at 65, this is dependent on your age. My retirement age is 65, Debra’s is 66.5. Some people can opt for early retirement at 62, again it is driven by your age. Your SS statement breaks it down for you. The other fallacy is that you can pay in as much as you want through payroll deduction. Social Security (FICA) is withheld at a specified rate. If your income hit’s $118,500 annually, no more FICA deductions are withheld for that year. SS is not a retirement plan.

Let’s switch now to Long Term Disability Insurance (LTDI). Not everyone has LTDI. In 2013, 69% of workers in the private sector did not have short term or long term disability. It is a mistake to assume that your employer automatically has a disability policy for it’s employees. I will give you an example that will scare you. Let’s say a 50 year old single individual is employed and is earning $48,000 a year. He is disabled and can no longer work. His monthly gross income is $4000 a month before he is disabled. Making some assumptions we can estimate that his monthly disability income will be no more than $1700 a month. Or about 42% of his take home pay before disability. Also we need to remember that once you are on disability, your employment ceases and you will need to pay for health insurance. If you opt for COBRA, will be paying 100% of the premium. I will talk about health insurance and COBRA in the next blog.

There is another potential issue that we ran into with our LTDI. After we were approved, we found out  there was a clause in the policy that requires you to file for SSDI. If the policy is employer paid insurance like mine, the employer is not required to give a copy of the actual policy, only a “brief policy description”. This doesn’t sound like a big deal until you realize that once the SSDI is approved, the Insurance company can then deduct that amount from your monthly long term disability insurance benefit amount.   Please check on your Long Term Disability Insurance Policy. The policy may or may not include short term disability insurance which would cover you in the event that you were off work for several weeks for a medical reason. Short term disability can, like in my case, be converted to long term disability.

The last clarification I will make is about taxable income. Just because you are disabled or retired, doesn’t mean you stop paying taxes. Disability income in the eyes of the IRS is still income.

I will end with the disclaimer that I am not a tax expert or a financial planner. What is in today’s blog is my opinion and the experiences Debra and I had with the process.

 

“Every Minute Counts” Mike’s Hughbanks Reaction

“Every Minute Counts” was aired on PBS nationally Wednesday January 25 at 9:00 PM Central time. Debra and I were asked to be part of a panel at a prescreening in Omaha. What follows is what I took away from the documentary, sorry, I am a list maker, so first you will see my list of the points that resounded with me, and then a summary of my thoughts at the end.

 1.       Alzheimer’s disease is the biggest epidemic we have in this country.

2.       5 Million Americans are living with the disease.

3.       Epic disease with a case every single minute in this country and every 4 seconds around the world.

4.       One of the top six things that are going to kill us.

5.       It will sink the health care economy and national economy unless something changes.

6.       The disease will take us (country) down.

7.       6th leading cause of death in the US.

8.       No effective treatments and no way to prevent it.

9.       Individuals with the genetic mutation are guaranteed to get Alzheimer’s, probably before age 60.

10.   It is estimated by 2050, 14 million will be living with the disease in our country if nothing changes with a cost equivalent to our defense budget of 1 trillion dollars.

11.   500,000 people living in Florida live with Alzheimer’s.

12.   Long-term care in an Alzheimer’s Unit can easily exceed $ 5,000 a month.

13.   Neither Medicare nor Private Health Insurance pays for long-term care in a facility.

14.   Alzheimer’s is the most expensive disease in America exceeding heart disease and cancer.

15.   Alzheimer’s will be the financial sinkhole of the 21st century.

16.   1 in 5 Medicare dollars right now go to someone with Alzheimer’s, it is projected this will soon be 1 in 3.

17.   “Granny-Dumping” is becoming prevalent. Caregivers need a break so they take their demented family member to the ER. It is classified as a “Social Admit” so Medicare does not pay.

18.   Medicaid is a federal program but is administered by each state. The wait in Florida for Medicaid to assist with long-term care can take up to 5 years. You are place on “The List”.

19.   New Hampshire’s median age is even higher than Florida, partially because the younger people s are exiting the state. Alzheimer’s is epidemic in New Hampshire. In 1996 the State of New Hampshire put a policy in place to stop the addition of nursing home beds with the intent of limiting the state’s Medicaid spending.

20.   Of the top 10 diseases, (how people die), Alzheimer’s is the only one where there are no survivors.

21.   Most people with Alzheimer’s are not able to lobby or even discuss their diagnosis due to the nature of the disease.

 

Some of the experts that were featured in the documentary;

Dr. Rudolph Tanzi, Harvard Medical School.

Mathew Baumgart, Alzheimer’s Association

Dr. Stephen J. Bartels, The Dartmouth Institute.

Senator Edward J. Markey

Dr. Beau Ances, Washington University School of Medicine.

My first reaction to the documentary was sadness for the real life examples of people living with the disease. Honestly, the facts and numbers were mostly known to me because I speak about Alzheimer’s and this information is out there already for the public to see. Debra posted her reaction previously and I will say it affected her very deeply. I can see now that when she sees people in the later stages of the disease as represented in the documentary, she superimposes my face on them knowing that this disease is a death sentence for me.

After time to process the documentary, I started to feel a little angry. It depicts people living with the disease in later stages. I felt it was not doing justice to those of us who have the disease in the Early Stage and it is progressing more slowly. I checked my email to find that others felt the same way. A high school classmate asked me if I required full time care or was in a nursing home yet, everyone with Alzheimer’s is supposed to be unable to care for him or herself.  I now realize that the purpose of the documentary was to make the public aware of how horrible this disease really is. They had to have something of a shock value to the program.

There are forms of dementia that are very aggressive.  I live in the minority because of my age, I am part of the 200,000 Americans diagnosed under the age of 65. I am also in the minority in that I am a white male. People of African and Hispanic descent are at higher risk as are women. Because I am an insured white male, I was diagnosed early. That is not always the case, which is a travesty. It really is a matter of social justice. I think of the groups that I speak to and am quickly realizing that well over 95% are white. Who is reaching the minority populations that are actually at greater risk? I have been speaking to predetermined groups, a lot of them are dementia support groups with very minimal attendance by minorities.  We can and need to do better. Every American deserves quality medical care and support.

Where do I go from here? I am using the documentary as a springboard. They made the comment in the program that most people with Alzheimer’s cannot speak for themselves. I feel the overwhelming responsibility to speak not only for myself, but also for those who cannot speak for themselves.

What can you do? Find out who your legislators are for your respective state and district, write them and call them. We need continued increases in funding if we really want to figure this disease out. Before I was diagnosed, I had no idea what the prognosis was for someone diagnosed with Alzheimer’s disease.

I think the documentary was very well done. It is available to view on line on PBS. Please recommend it to others, like it on Facebook, and any other form of social media you use. Thank you to PBS and Home Instead. I had the privilege of speaking at Home Instead Headquarters in Omaha last year. They are passionate about elder care. The founders of Home Instead, the Hogan’s have an amazing story, very classy people and a quality organization.  

In conclusion, I feel I need to break my summary down into two issues. The first is public awareness, which this documentary addresses very well. It needed the shock value and therefore I think it was very beneficial. Many Americans have no idea what Alzheimer’s disease is and how it affects families.

The second issue is those living in the Early Stage and the importance of early detection. I remember visiting with Dr. Petersen when he was in Omaha from Mayo last year when he made the point that we should be concerned about early detection. I did not see representation in this documentary about the probable majority of people with Alzheimer’s that are symptomatic, maybe undiagnosed, and do not yet require institutional care or in-home care. Where is the platform for this discussion? We have millions of Americans living with some form of dementia that are not in care centers nor do they require full time in home care.

At times, I feel I am the only one on my soapbox doing the talking. If we create a platform for mid-late stage care, shouldn’t we also have a platform for early detection and early stage? The public and the agencies, especially the Alzheimer’s Association have to realize that some of us with a diagnosis of Early Stage Alzheimer’s do have a voice and we do want to be heard.

My name is Mike Hughbanks, I have Alzheimer’s Disease, I do not live in a care center, I do not require in home care. I am 60 years old living with my loving wife writing a blog about my life with Early Stage Alzheimer’s disease. I represent millions of Americans under 65 and over 65 that are in the Early Stage of this disease. We have a voice and need to be heard! Let’s continue the conversation, this PBS program was a good start, but it is only a start.

Mamma Jo, A Personal Alzheimer’s Story

I have a personal story to relay to those who read my blog. It brings this blog full circle. Nadine lives in California and has been following my blog with her mom since its inception a year and half ago. I did not have a direct relationship with Nadine or her mom (Mamma Jo) other than a comment submitted after my first blog thanking me for telling my story.  I gave her my contact info via private email and thanked them for following the blog. I didn’t hear anything further until I received a phone call today.

I found out Nadine’s mother was diagnosed with Alzheimer’s in 2014.  Mamma Jo did not have health insurance. She was just an “unemployed poor black woman” (Nadine’s words). Mamma Jo was unable to work after 2009 due to confusion and memory issues. The family believes now that is was probably the early stages of undiagnosed Alzheimer’s . As her condition continued to decline, Nadine and her family were financially able to place their mom in a care center during the winter of 2015. Nadine printed my blogs and would take them to read to her mom in the care center, I was known as “Omaha Mike”. For some reason she remembered me and would often ask if I had written to her. Mamma Jo thought I was writing the blogs directly to her. Sometimes they would have to reread one of my posts and Mamma Jo would act like it was a new “letter”. For some reason something in her mind made her fixated on the blog.

 Nadine called me today to let me know her mom had passed at the age of 57 and to tell me thank you for giving her mom something to look forward to, she had kept my “letters”. I was in shock. If you have read my blogs, you would know that they are informational and talk about my journey with the disease. I have not dealt with loss associated with Alzheimer’s since my outreach began because I mostly talk to individuals in the early stages. I try and offer hope that there will be advances in drug trials that will slow the progression.

The family does not know if her Alzheimer’s was genetic, money was not available for genetic testing. The family also does not know if they carry the gene. I have overwhelming sadness in my heart as the family deals with arrangements for their mother. I wish there was good news for others who, along with me are diagnosed with the disease. I wish I had words of comfort.

We lost two acquaintances/friends through the blog in the last 36 hours. In both cases, the disease was left undiagnosed until late in the disease progression. I think those of us who are able to continue to raise awareness about this horrible disease should take this story to heart.

My heartfelt condolences go out to Mamma Jo’s family. Thank you for allowing me to post this to my blog. My hope is that others reading this with family members that are symptomatic, that are as yet undiagnosed, would seek medical attention to get a diagnosis.  

This poem by Emily Dickinson came to mind.

Not In Vain

If I can stop one heart from breaking, I shall not live in vain:
If I can ease one life the aching, Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.

 Mamma Jo, your story will impact others.

Debra’s Reaction to “Every Minute Counts” PBS Documentary.

On Wednesday January 25th, PBS aired a documentary about Alzheimer’s Disease. Debra and I are both going to share our feelings about the documentary. This post is Debra’s reaction:

Mike and I were asked to be part of a panel to discuss “Every Minute Counts” after we viewed the film for the first time.  The forum was put together by the Alzheimer’s Associate and several home health care providers.  We were all there to have an advanced viewing of the film.

I will tell you this right off the top:  I had a totally different opinion about the film than Mike did!  It has been interesting to talk about the film as we put more time between the viewing.  If I had to summarize the bullet points of our discussions since the viewing I’d say I’ve softened my views and Mike is growing a bit more concerned.

My feeling is that the film was designed to have a shock value.  Alzheimer’s is a very expensive disease.  Who knows what it’s actually going to cost us because we have only been living with this disease for a year and a half.  The film was VERY clear that the costs are going to bankrupt our society if we don’t put some pressure on the government to make money available for research.   Medicare picks up some of the costs but the actual cost for caring for Mike will be in how to pay for nursing care in our home as long as we can and then potentially nursing home care.  The costs are huge.  The costs keep going up exponentially as we have more and more Baby Boomers aging in the US.

Mike and I are in a good place right now.  His disability insurance is keeping us out of financial harm. So far.  We have no way of knowing what our future holds.  However, after the film I felt like my gut had been punched over and over again.  I wasn’t sure I would be able to add anything to a panel discussion.  I wasn’t sure that my brain and mouth would cooperate!  I felt like my future was in the palm of my hand and what I was holding was burning my flesh.  Not a good feeling at all.  The film was doing a very good job of painting a very bleak future for Mike and me.

Once you see the film you will understand that the two women living with Alzheimer’s were at the end of their lives.  One woman was elderly and her son was faced with a fact that Mom could no longer live by herself and had to place her in a residential setting.  Huge costs looming in front of him

The other lady was a 60 year old Hispanic woman who has genetic Alzheimer’s  Her daughter is her main care giver and she too has the genetic marker and knows that soon enough she, too, will be in the same chair as her mother now sits.  Horrible situations.  Horrible.

Mike is in the early stages of Alzheimer’s I feel we were lucky that we caught it early.  I don’t think anyone can perfectly tell us how long it will be before we see dramatic change in Mike’s health.  But we are looking at something that will be in perhaps 10 years or even longer.  The film did not talk about how Alzheimer’s affects his group of folks.  I suppose it would not have made as a dramatic picture seeing Mike making coffee in the morning.  Or getting his grocery list ready for the week, doing the shopping, working on his blog, etc.  He is doing well.  We certainly know that he has Alzheimer’s.  There is short term memory loss we are dealing with, but it is just the two of us for the most part and we are coping.

For those of us living with Early Onset Alzheimer’s we are in the beginning stages of this disease.  The film was calling for us to understand the huge costs of taking care of everyone that will be affected.  It was not a feel good film for me.  And that is an understatement.  However, I live my life with Mike one day at a time.  I can’t look to the future.  And as the film was being shown I saw my future and I wanted to run. Mars didn’t seem far enough away at that point!!!  Today, as I’m writing this, I don’t have the same feelings.  Mike and I  are fine and are living our lives as fully as we can!  We love each other very much and will continue to work together on this disease for as long as we can!

Cognitive Decline

One of the questions I get from people when they find out I have Alzheimer’s is how I got to the point that I wanted to investigate my symptoms. The conversation quickly goes to my diagnosis of cognitive decline. Technically, the term is Mild Cognitive Impairment (MCI). The Alzheimer’s Association defines MCI as “changes that are serious enough to be noticed by the individuals experiencing them or to other people, but the changes are not severe enough to interfere with daily life or independent function.”

In my case, it is known as “Amnestic MCI“. I may forget important information that I would previously have recalled easily such as appointments, conversations or events. It is hit and miss on what I can remember. I know NCIS is on Tuesdays, Blue Bloods in on Fridays. I have to trim our tree in the front yard a little so I can put up our flag for Veterans Day. I will forget this if not reminded or if I do not put it on my to do list.

Non-amnestic MCI affects thinking skills including the ability to make sound decisions, judge the time or sequence of steps needed to complete a complex task, or visual perception.  My decision making skills are slowed, but intact.

When I explain that I have issues with memory, people are quick to tell me that they do also, it is part of aging, which isn’t a false statement, but it needs further definition. When is it time to seek medical guidance if you are having memory or cognitive issues? In my case, I was very aware that is was getting worse. I knew I was forgetting things at work. I knew something wasn’t right so I started investigating options.

Cognitive Decline is a lot more serious and prevalent than people realize. The Centers for Disease Control (CDC) compiles data through the Behavioral Risk Factor Surveillance System (BRFSS). It is the nation’s premier system of health-related telephone surveys that collect state data in all 50 states. Utilizing this data, the Alzheimer’s Association developed a fact sheet on cognitive decline in Nebraska. I will summarize some of the high points about Nebraska.

  1. 9.4% of those 45 and over report that they are experiencing confusion or memory loss that is happening more often or getting worse.
  2. More than 60% of those reporting confusion or memory loss have NOT talked to a health care professional about it.
  3. Those with memory problems, nearly half say it has created functional difficulties for them. They had to give up day-to-day activities or it interfered with work or social activities.
  4. 63.9% of those with memory problems have NOT talked to a health care professional.
  5. 27.9% of those with memory problems live alone.

So what does all of this data mean? It means we need to realize that when memory and cognitive issues are noticeable, they need to be discussed with your health care professional. We can no longer make the assumption that it is just part of the aging process. As I look back, I was having issues years before I was diagnosed. Sometimes it’s what seems like little things.

  1. Walking to another room to get something and forget what I am going after.
  2. Leaving my cellphone somewhere in the house or in the car.
  3. Being late or forgetting an appointment.
  4. Being forced to create a list of some kind to remember what I need to do.
  5. Telling my wife that I started the crock pot (for the 3rd time today).
  6. Losing the ability to concentrate on multiple things at a time.

These are only a few things that I noticed. One of these things could be easily dismissed, but with all of these things working together, something was obviously wrong. Several years before my diagnosis, I was having to create spreadsheets to organize my workflow and even to organize my day. I had to stop putting my wallet and car keys in my desk. I would get to the parking garage to go home without my wallet or keys. I was really self conscious about it, there was the fear that someone at work would notice that my memory was getting worse.

The Alzheimer’s Association has a wealth of information available on their website at Alz.org. More information about the BRFSS is available on the CDC website at cdc.gov/brfss.

Thanks Kevin for the new look on the blog, I appreciate it!

Debra’s Perspective – The Omaha Walk

Mike is a marvel. He goes out and talks and talks about his life with Alzheimer’s. I hear so many people talk about how brave he is, and I agree. I have also heard many people when hearing of Mike’s Alzheimer’s being very sympathetic towards his lot in life. “I am SO sorry to hear that diagnosis. Wow, that’s bad…” I absolutely understand both reactions. However, I come towards Mike’s diagnosis with a little bit of a curve thrown in. I am thankful for an early diagnosis.

1 in 9 Americans over 65 will have Alzheimer’s disease. Women get a double whammy. 60% of us are going to be the care givers on top of the fact that 1 in 6 women will get Alzheimer’s themselves. With this many people affected by a disease that scares us so badly we need to be pro-active and find some answers. And I mean we need to be pro-active NOW!

Dr. Ronald C. Petersen is one of the top researchers in the world of Alzheimer’s. He had been at Mayo Clinic for many years and now travels the globe to inform doctors on how to treat people with the disease. Mike was able to spend some time with him not long ago. Warm fuzzies all around with this doctor. He has only compassion and empathy for those he tries to help.

Research is the name of the game. Early diagnosis is the name of the game. These two things go hand-in-glove as far as I’m concerned. Dr. Petersen is all about research and early diagnosis. So, let’s jump in and get started.

Because Mike was able to get an early diagnosis he has improved his quality of life. We’ve changed our diets. He’s changed his exercise program. He has worked hard to get quality sleep every night. He has added large doses of DHA and green tea extract. He is still able to work puzzles and does so daily. He keeps working his brain. Why?

Well, because research is showing that we may not be as close to a cure as we would like but we are coming to an understanding on how we can live a longer quality of life with this disease. And believe me when I tell you we work each piece of this crazy puzzle!

Think about it like this….we know what we need to do to have a healthy heart. Of course we know this…kind of old news, right? Well, think about what a healthy brain diet can do for your brain. Think about all the things you can do for your heart. There is some cross over going on with this train of thought. I am not a doctor so I don’t know all the science that goes into the build up of plaque and tangles. But I do know that research is vital.

Please give some thought to your life and to the life of your loved ones. Chances are you will be affected with this disease. Give some thought to donating an amount to the cause. Personally, I would love to find a cure. But realistically I want more that I can do to help Mike with this disease. And research will help us with every new development we see as Mike’s disease moves ahead.

If you’ve stuck with me this long and you’re at the end of this post with me? I thank you! You are a good relative or friend. Your friendship means the world to us. So many of you are our best cheerleaders. I especially think about Mike’s mom who recently died. She was Mike’s biggest cheerleader. She is sorely missed. So, thank you from the bottom of my heart for your best wishes! We love you all!

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