Jan 222014
 

Charles WarnerTwo years ago, at the age of 69, I was diagnosed with Alzheimer’s disease. Shortly after receiving the diagnosis, I began to think a lot about the future. The more I thought about the future, the more I realized that I needed to implement plans for the inevitable progression of the disease while I had the ability to do so. This also seemed much more proactive than just sitting around worrying about having Alzheimer’s.

Prior to my diagnosis, I was a practicing attorney in civil litigation for 45 years.  During my career, I did not worry too much about what the future held for me and my family. I simply assumed that I would sell my law practice, and, on occasion, hire myself out as a private mediator of legal disputes. I had been working as a mediator for many years and was certain that I would continue after I closed my actual law office. That, of course, did not turn out as expected.

Accept Your Diagnosis        

As a person living with Alzheimer’s, I have learned that acceptance is essential in making meaningful plans for the future. I know it may be difficult, but accepting the reality of the diagnosis is absolutely necessary to enable those of us living in the early stage of the disease to take the appropriate steps to plan for the future. You want to do this now while you still have the capacity to make your wishes known and have them memorialized in legal documents. While it is important to plan for the future, do not let the fear of the future ruin the life you can live now before the disease progresses.

What does it mean to “plan for the future?” In my opinion, among other things, this means to see to your estate planning. Estate planning is the preparation of wills, trusts, advanced health care directives, and generally what you wish to have happen with all of your assets and possessions upon incapacity and/or death. Collaboration with a legal professional is not required in order to plan for your legal and financial future. You can find copies of advance directives and other estate planning forms through the American Bar Association, office supply stores and your state’s health department or local library.

If you choose to work with a professional, a well-qualified legal advisor can help you prepare the required documents.  Locate an elder law attorney who has expertise in the preparation of the documents necessary to carry out your wishes as to the disposition of your real and personal property. Attorneys doing this type of work usually describe themselves as having expertise in “Estates and Trusts.”

Family and Financial Matters

Discuss your estate plan with your family.  Make a list of the assets you possess. What are they worth? Use the legal and financial worksheet to help you organize this information and share it with your family or your lawyer of choice.

I personally found a great deal of peace in completing the legal documents. It has been completed and implemented now and I no longer have to worry about it. Those of us with Alzheimer’s are better off looking at what we have left… not obsessing about that we have lost.

 

Chuck Warner is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG). He encourages others living with the disease to be actively involved in planning for their future and engage in a fulfilling life. “An Alzheimer’s diagnosis feels like the end of the world, but it’s not – you can make a difference.”

 

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Dec 062013
 

early onset alzheimer's“In all likelihood, you have mild cognitive impairment that will eventually lead to younger-onset Alzheimer’s disease, especially with your family’s history.”

With that brief pronouncement, my world, my husband’s world and our children’s world changed forever. My husband Jim was 48 when we heard those words. I was 40. Our daughter was 9 and our son was 6.

I wasn’t exactly sure what it all meant. The more reading and research I did, the more depressed I became. Words and phrases kept jumping off the page….”no cure,” “death,” “progressively worse,” “dependent,” “no treatments.”

I started to separate myself from Jim and the disease to the point that I became almost businesslike. Researching, interviewing doctors, contacting the Alzheimer’s Association – I was just trying to figure out what was happening and what kind of timeline we were on. I soon found out that there is no timeline. In fact, no two patients have the same symptoms at the same time, in the same order or on the same schedule. It makes for an isolating and desperate feeling.

With two young children at home, I was unable to wallow in my self-pity. I am no longer afforded the luxury of thinking too far ahead, dreaming of a life enchanted. Luckily we are an active family with hectic schedules; this helps me focus on my to-do list and not on our plight.

I have slowly developed an awareness of the new Karen. The old Karen liked to think of herself as a giver, and she was to a certain point. But the new Karen must constantly be giving to Jim, the kids, to others. And it feels good.

Lifting my head off my pillow, pushing away the covers and facing the day ahead of me takes every ounce of self-motivation I can muster. But if I don’t, I won’t get paid, the kids won’t have breakfast, their lunches won’t get made and they won’t make it to school. It is a cycle, and everyone lives it.

Slowly – very slowly – I have pulled myself out of the fog, out of the darkness. Don’t get me wrong; I still have moments of sheer terror and obliterating pain. But I have found my life again. I thought I found my life when I met Jim. Then I thought I found my life when I had each of my children. But I think I was always trying to figure out what my true calling was. I felt I had a purpose, but it eluded me until this past year.

I started by doing advocacy work with the Alzheimer’s Association in Washington D.C. That led to some interviews about the disease. Then, with encouragement from friends, I started writing a blog chronicling our path through younger-onset Alzheimer’s. Emails started pouring in, then more speaking engagements and interviews. Suddenly I realized I had found what I was looking for. I was looking for my life’s calling and this was it. It wasn’t what I would have ever expected or guessed or hoped for, but it is my calling all the same.

Jim’s mother and brother died of Alzheimer’s disease, so it doesn’t take a genius to realize our children have a high probability of also succumbing to this hideous malady. There is my motivation. There is where my strength starts and ends. I don’t feel as if I am going through a mid-life crisis as much as I am going through a mid-life awakening.

Life is so much different since our world became engulfed with all things Alzheimer’s. I feel like a small pilot light inside of me has now been ignited and is ready to spread like a wildfire.

No day is the same and no day is easy. There are days when Jim barely acknowledges me or our kids. He is in his own world. It is hurtful. It is lonely. It is heartbreaking. And I know it’s only going to get worse.

Luckily, I know I am not alone. I think of what I am going to do to help others. By helping others, I will help us. It is a continual shifting back and forth, like water in an eddy.

There is a sense of duty and a sense of awareness that I have never felt before. It empowers me to not only get out of bed and make it through my day, but to do it with a sense of purpose, with an understanding of pain, and the ability to feel powerless against a force I have no control over. There is no way of knowing when it will be felt or when it will strike a new low, but if I were to let myself lose focus of the bigger picture, I would be crushed under the weight of uncertainty that is equaled out by a certainty of what is to come.

I am strong. I am weak. I am a caregiver for a man with younger-onset Alzheimer’s disease.

I will survive. It may not be pretty. It may not be quick. It may cost me everything I cherish, but I will survive with the help of friends, family, strangers and myself. I must survive for my children and for other caregivers that are struggling just as I am. We will all survive together, knowing that we are not alone. Feel the love and the power of others rooting for you to endure.

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

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Nov 142013
 

lehmann

Next month, Mary Margaret and I will have been together 50 years.

She is a very positive gal, extremely caring and inclusive with her friends. I am not always a social animal. Mary, however, is very outgoing and makes new friends easily. These days, we are attached at the hip… but it wasn’t always this way.

In 2009, I was diagnosed with Alzheimer’s.

After I received the diagnosis our lives changed. At the time, Mary Margaret and I were living in California, but this news caused a great sense of stress, so we relocated to Minnesota to be closer to family. Moving wasn’t difficult – it actually took a weight off our shoulders. Then one of my wife’s friends said “Why don’t you call the Alzheimer’s Association’s 24-hour helpline?” That really changed our lives. Not only have I become very involved in the Association, but so has Mary. During our career years, we really did very little together – now we do everything together. Our connection to the Alzheimer’s Association and shared commitment to raising awareness of the disease has brought us closer together as a couple.

Before I received the diagnosis, Mary and I were absorbed in our separate professional lives: She had her activities, and I had mine. If we got together on a Sunday, it was a big deal. It’s almost like we are dating all over again. She has turned me on to subjects I wouldn’t normally be interested in, and we have immersed ourselves in an eclectic series of programs. She is an avid reader and I’m not; however, through themed book presentations I have been able to learn something new with Mary, and that was a different experience for me. In turn, I have turned Mary on to the arts and now we are both passionate about visiting museums. There isn’t a local museum we haven’t been to!

We support each other.  The experience for caregivers and care partners is unique to the relationship. Mary and I support each other on a daily basis; we have to. She is the social contact, the “hostess with the mostess”, and I am her assistant, you might say, helping in the ways I can. I’m not a terribly patient person, so I am trying to be more patient, which is the least I can do.

The biggest thing that I notice is her relationship with other caregivers. I have a deep respect for the sacrifices that caregivers make every day to support individuals like me who are living with the disease. Today, there are more than 15 million unpaid caregivers of people with Alzheimer’s and other dementias in the United States. The role is demanding; they are our lifeblood.

Mary Margaret’s compassion extends beyond our relationship. She spends much of her free time talking with other caregivers; learning from others and offering support. She has hundreds of followers from all over the U.S. on Twitter, and she will refer articles to them to get feedback and exchange ideas. Compassion is in her genes! During National Caregiver Month, I want Mary Margaret and other caregivers to know that I am grateful. THANK YOU!

What makes a caregiver in your life special? Leave a comment here on the blog, or leave a tribute for a caregiver or care partner at the Caregiver Center.

About the blog authorKen Lehmann is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG), and he pays tribute to his wife and very special care partner Mary Margaret during National Alzheimer’s Disease Awareness Month. As an Advisor, Ken encourages others living with the disease to avoid worrying about the past, but to “live in the moment.” 

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Jun 212013
 

Jenny PToday is all about motion.  There has already been hiking – and there will be boating, golfing and biking.  Together with my sister and two wonderful friends, I am participating in Alzheimer’s Association The Longest Day, which involves 16-hours of activity to honor those with Alzheimer’s and their caregivers.

My father was diagnosed with early-onset (also called younger-onset) Alzheimer’s late last year. There is a hereditary mutated gene that runs in our family that has also affected my dad’s father and his sister.  The grandfather of my teammates, Alissa and Erica, also has Alzheimer’s.

The four of us decided to form team “Fighting to Remember” and join The Longest Day to honor these two amazing men.

Fighting to Remember Longest Day Team Alzheimer's Charity

Hiking at sunrise, boating until sunset

At sunrise, the team began hiking because my dad loves to walk in the woods. (He is a great morel mushroom hunter!)

Now, I’m getting ready to undock the pontoon on Lake Wisconsin. We plan to boat for a while and park at the sandbars to play cards. My dad has spent his whole life fishing and he loves playing cards. The same is true for our friends’ grandfather, who grew up in Chicago and moved to his house on Lake Wisconsin 35 years ago.

Tonight, we will dock the boat and have a huge celebration with our families, grilling a pork shoulder and talking about our successful day. We are so honored to be a part of this event and are amazed at the number of people who have come forward to share their stories and struggles with Alzheimer’s.


Reflections on the water

I am grateful to have such a strong dad. He has known that Alzheimer’s disease would likely affect him due to the hereditary mutated gene and has lived his life to the fullest because of it.

We are making plans to travel over the next year so we can continue to make memories while he is strong enough to do it. Unlike most people my age (I’m 33), I choose to live with my parents, along with my 2-year-old daughter, Lauren. This way, we can help my dad and continue to make memories.

I am so grateful for my wonderful family. My sister, Rochelle, is right down the street. Almost every night we get together as a family. I’m also so glad I can help my mom with emotional support during this time. We are best friends, and I love living with them.

Committed to fighting Alzheimer’s beyond June 21

Our team has raised more than $7,200, but our efforts will not end here. We will continue raising awareness beyond today. We are in it until Alzheimer’s is just a distant memory.

About the blog author: Jenny Peterson’s father was diagnosed with younger-onset Alzheimer’s. She is helping to raise awareness and funds with team Fighting to Remember in the Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to honor those living with Alzheimer’s disease and their caregivers

Aug 302012
 
Rob Epp is a full-time Alzheimer's caregiver for his partner Jordan.

Courage is the thing you need most and the hardest thing to get when you’re faced with Alzheimer’s Disease.

Jordan, my partner of 17 years has younger-onset Alzheimer’s. His father and several grandparents had memory problems, so the diagnosis was not totally unexpected, but it is still hard to grasp that someone so young and vital is facing such a ravaging illness.

Since Jordan’s diagnosis four years ago, we’ve both experienced the stigma that is attached to this disease. At the time of Jordan’s diagnosis we were lucky to live in Seattle where awareness of Alzheimer’s is high. That helped us avoid many problems that I know others experience from the medical establishment. But we’ve each had to handle other issues. Memory problems in older people are expected and tolerated. Memory problems in younger people are often seen as a serious defect.

One situation that stands out in my mind happened on a visit to Florida. After his diagnosis Jordan had severe depression and anxiety, and he was taking a powerful combination of medications, which caused him to lose his balance. He decided to walk several blocks to the beach at sunrise one morning and fell. A police officer happened to be in the area and stopped in his car. His response was “Sir, Are you drunk?” Jordan responded “No. I have Alzheimer’s.” The officer repeated that he felt Jordan was drunk and drove away leaving Jordan on the ground.

My experience with stigma was at work. Because Alzheimer’s remains a diagnosis of exclusion, it takes a tremendous amount of testing to reach that conclusion. I was taking more and more time from my high-pressure job for doctor visits. Jordan and I were also emotionally reeling from new memory problems that would appear weekly. (At one point, Jordan put socks in the fridge.)  I decided to take a leave of absence. When I returned, I found that a shadow replacement had been hired, and I was forced to leave six months later.

Finding courage

When faced with discrimination you must have the courage to say “I’m here and just as important as anyone else.”  We all have weak moments but fighting the illness sometimes means fighting for yourself or your loved one. Breaking Past the Stigma of Alzheimer's: Rob Epp's Story

There is stigma or discrimination surrounding any serious illness. Just ask someone with Parkinson’s or cancer or multiple sclerosis. But, we’ve also have found that people are generally supportive when they are aware. Many “stigma moments” are really caused by ignorance. People don’t understand Alzheimer’s and many even don’t understand what it means to be chronically ill.

So often, people only think of Alzheimer’s as an end-of-life illness. Even in hospitals nurses will say “but he’s so young to have it.” Courage to change the public perception thru education and awareness is key. And it’s usually accomplished one person at a time through personal contact.

Silence is the enemy

Alzheimer’s Disease consumes a tremendous amount of energy and resources. Families are often exhausted by the sheer volume of care responsibilities. And yet this disease is very poorly understood so we also carry the burden of having to educate others.

Jordan quickly tells people that he has Alzheimer’s in phone calls and in person so they understand. He also has cards for this purpose. Family is kept updated about his condition and even the little ones are told what to do if there is a problem. But education is also reaching out to the public.

I find time to do advocacy for the Alzheimer’s Association. It’s not easy since I don’t have family to help care for him when I’m gone, but it’s essential to raise awareness and unite people in the effort to fight this illness and help the people who have it. If people understand then they won’t be afraid. And if they’re not afraid then there is no stigma – just the disease.

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About the Blog Author: Rob Epp is a full-time caregiver for his partner Jordan, who was diagnosed with younger-onset Alzheimer’s four years ago. They live in New Hampshire.

Photos by Shannon Power

Jul 032012
 
American Flag

I have faced many battles in my life.  I served in Vietnam as a Marine Corps corporal. I also completed four tours in Iraq in the U.S. Army, and four of my sons served in Iraq, too.  But all my battles have not been while serving in the military.

My mother passed away from Alzheimer’s disease.  I lost my son, Dennis Jr., in a motorcycle accident.  And now, I am facing my own battle with Alzheimer’s disease.

I was preparing for a sixth deployment to Iraq when my Colonel and my wife brought up concerns about changes they were seeing.  I had just received a Secretary Manager of the Year Award, but I was aware that something was wrong.  I had been waking up in the middle of the night realizing there was something I forgot to do — or something I needed to do.  Recognizing my memory was changing, I decided to retire.   Too many people’s lives would be at risk if I went on a last tour in Iraq.

I was diagnosed in 2008 with early-stage Alzheimer’s.  When I received the diagnosis of Alzheimer’s, it was almost a relief.  It provided an explanation for what was going on.  It also provided a path forward.  There were plans I needed to put in place for the future.

I had made my living will before my first trip to Iraq. But after the diagnosis, my wife Mary and I updated our advance directives, power of attorneys and will.

Dennis Henley Sr. with General Franks and son Dennis Henley Jr.

Everything has been documented, so there is no dispute and no questions for my children when this disease progresses.  We dotted all the “I’s” and crossed all the “T’s” to make sure everything is in place. It’s an important thing for anyone who has been diagnosed to do.

It’s also important to realize that a diagnosis isn’t the end of the world.  Truly – it’s not.  You aren’t alone. There are so many people available to help you and so many people committed to finding a cure.  It’s difficult to accept, but easier to do if you are open and honest with those around you.

In fact, I talked until 2 a.m. about my diagnosis with one of my military buddies last week.  I have friends that I went through grade school, high school and the military with, and we have no secrets. We openly talk about this disease.  It’s a source of strength and comfort to have the people around me know what is going on. Alzheimer’s isn’t my fault.  It’s no one’s fault.  And there is no reason to feel guilt over it.  It’s out of my control.

It really helped having an Alzheimer’s Association representative from my local chapter come and explain why things aren’t like they used to be to my family.  I have 11 grandchildren – and they all understand that things aren’t quite the same and the whole family is making adjustments.  But that doesn’t keep us from spending meaningful time together, which is what I plan to do tomorrow on the Fourth of July.

We will all dress in red, white and blue and gather together for a barbeque at my son’s house.  Our flag will be at half mast, and I will remember the battles I have been in and the one I am facing now.  I believe we are here to help others – to leave a legacy.  As I spend time with my family, I know that I have left my mark by raising my family to be good citizens.  And I still have more to give. I will keep on moving forward and not give up.

Dennis Henley is a member of the national Alzheimer’s Association 2012 Early-Stage Advisory Group. He was diagnosed with early-stage Alzheimer’s in 2008. Prior to his retirement, he served in the U.S. military for 26 years, including working in counter intelligence for the Army and as the Chief of Security for the Army Corp of Engineers in Jacksonville, Fla.  Dennis lives in Littlestown, Pa., with his wife, Mary.  

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Jun 012012
 
Lee and Val

In 2008, at the age of 62, I was diagnosed with younger-onset Alzheimer’s disease (also known as early-onset Alzheimer’s). Not long after, I retired after serving 23 years as the President/CEO of the Private Industry Council (PIC) of San Luis Obispo County. While I thought I was functioning well, there were ample signs a few years before, indicating not all was necessarily right with my health.

Part of me recognized this, while another part of me chalked it up to work overload. In fact, I knew I was having a problem with my own self-confidence — and my 15 employees saw it more clearly, and earlier, than I did; if we are not careful, we tend to forget how intuitive employees truly are. Fortunately, we all came to a point of understanding that I needed help, and the Board of Directors and staff were ready to seek ways to retain me and keep me functioning, while also making sure we were all honest with one another, henceforth.

I was recognizing changes in my own behavior: I was losing my ability to juggle multiple projects. It took more effort to decide which projects had highest priority — and, worst of all, I realized that my self-confidence as an executive was rapidly eroding. I could not find any solutions to turn that around; I didn’t know how to fix it. This was brought home directly, on a couple of business trips (by auto), when I found myself overlooking familiar freeway exits and driving well down the road before realizing I was way off course.

All of this led my wife and I to visit the Mayo Clinic twice in Scottsdale, Arizona, in 2006 and 2007; we also participated in a battery of testing at U.C. San Francisco. I was finally diagnosed with Early-Onset Alzheimer’s on that visit (also known as Younger-Onset Alzheimer’s), with evidence of “Executive Dysfunction.” Several medical doctors, staff and students participated in that discussion, and they video-taped the discussion.  It was an eye-opening experience.

Back home in San Luis Obispo, we also took the time, on two occasions for me to be tested for sleep apnea, in a local lab located in our community. Outcome: “Positive.” Thanks to the technology of this remarkable invention, I now sleep better than I ever have in my life. While I am no expert in this technology, I am convinced there is a direct (negative) relationship between sleep apnea and potential damage to the brain, over time.

Several months later, when this all sunk in, I resigned myself to accept this fate — over which I would have zero control. But, I also have been able to put a face on Alzheimer’s in our local community, by being an advocate and local voice. I have written several “Viewpoints” and “Commentaries” in our local Tribune newspaper. I have formed a close relationship with our local Alzheimer’s Association Chapter Office and its staff, secured a seat on the three-county Chapter Board of Directors, and also accepted an appointment to the Alzheimer’s Association Early-Stage Advisory Group (ESAG) for the 2011-2012 year. This participation, in turn, has opened more new doors with the National Office of the Alzheimer’s Association in very positive ways.

I am well aware there is no known cure for Alzheimer’s. It’s a given, for now, and I refuse to spend much time worrying about it. I prefer to be matter of fact with regard to my diagnosis and I spend more time out in the community and working with the Alzheimer’s office to support them in their work. If there is anything I worry about, it is my family. Family and friends are the best medicine that any of us will have, in a journey such as this one.

Read about Val’s experience as Lee’s care partner.

Blog author Lee Ferrero is a member of the national Alzheimer’s Association 2011 Early-Stage Advisory Group. He is eager to put a face to Alzheimer’s and alert individuals, communities, the media and local organizations about the critical need to act on this disease and help find a cure.  Lee lives in Los Osos, California, with his wife, Valerie. Lee and Valerie have two children, Jennifer and Eric. They take great delight in spoiling their grandson, John Ferrero Stout.

Jun 012012
 
Lee and Val

I’m Valerie Ferrero, wife, mother and care partner. My husband Lee was diagnosed with younger-onset Alzheimer’s (also known as early-onset Alzheimer’s)  in November 2008. This is the beginning of my story…..

It is difficult to know what action to take, what plans to make, or what the future holds when you don’t have the answer to the “elephant in the room.” It took more than seven years for us to get Lee’s diagnosis of younger-onset Alzheimer’s.

We began noticing problems when Lee was in his early- to mid-50s. He was the CEO/President of a local non-profit. I realized that things were worse than I suspected when his staff started calling me to find out what was going on or why he missed a meeting. I had been noticing early signs for some time by this point.

I really didn’t know that the problem would turn out to be Alzheimer’s. For one thing my husband was young.  Alzheimer’s happened to older people — or so I thought. He kept telling me it was the stress of his job, and I preferred to think that rather than any alternative.

In our quest for answers, we visited the Mayo Clinic in Scottsdale, Arizona, in 2006, where Lee was diagnosed with Mild Cognitive Impairment and Executive Dysfunction. The doctor prescribed a low dose of Aricpet and suggested that Lee might want to retire. He also stressed that Mild Cognitive Impairment does not necessarily turn in to Alzheimer’s. The doctor wanted us to return in a year.

We returned home and went about our daily lives. We saw a bit of improvement in Lee’s memory issues. But as the year went on, I was still hearing from his office and noticing changes myself.  Lee has always been a “people” person. Suddenly, he didn’t want to go to events or meetings. I sensed changes in his personality.  Negativity was creeping in where it had never been before. The little things were slowly becoming bigger issues. My once confident husband was losing his self-confidence. He began to second guess himself. And he worked longer and longer hours to make up for the loss of work time in the day.

His work was still stressful and he had become distant and defensive.  Things were getting progressively worse. We returned to the Mayo Clinic about a year and half later. The first visit we were there for several days. This time we flew in and out the same day.  The diagnosis was still Mild Cognitive Impairment and Executive Dysfunction.  The doctor wanted to continue to monitor his progress.

Again, we continued on in our everyday world, but friends were beginning to ask if anything was wrong. Lee was showing more signs of something being very wrong and of considerable stress. He had convinced himself that it was only work-related stress, but by this time I could no longer ignore the “elephant in the room.”

Our children were very aware of the problem from speaking with him every weekend and when they visited. The same story would be repeated over and over again. The same question asked over and over again.  This was creating a great deal anxiety for me. I was working and trying to balance the situation at home. It became increasingly difficult. I really needed answers.

I began to notice several troubling changes. He became dependent and seemed to need to know that I was around. This was something totally alien to me. I finally mentioned to our doctor that we needed to do something closer to home. This is when he mentioned the University of California, San Francisco. Another patient suffered similar problems and had had good luck at UCSF.

We scheduled the appointment as soon as possible. Our daughter, Jenny, was pregnant with our grandson John at the time. Our son, Eric, lives in Manhattan. Eric offered to go to the clinic with us. At first I resisted thinking of his costs and time. Fortunately, I relented and he met us in San Francisco. He set up the hotel rooms and everything for us. It was really helpful to have him there.

We were scheduled for early in the morning. I brought copies of all of the records from our never-ending quest for a diagnosis. The day before the visit Lee had an MRI of the brain. We picked up the CD of the scan to take with us. Lee went off with a couple of doctor’s and Eric and I met with other staff. They asked a lot of questions, and I gave them the records we’d brought with us. A little after noon, Lee and the doctor came out. The doctor said that we needed to return about 2 p.m. for a meeting and review of the morning.

Off we went to lunch on the campus. We arrived back at the memory clinic and waited in a conference room with a long table. We were joined by the different members of the staff that the three of us had been meeting with earlier, as well as students and some other doctors. There was a doctor from England. Dr. Bruce Miller, the memory center director.

Dr. Miller asked what we wanted to get out of the visit. My response, “answers.” He then explained the diagnosis. It was “Early Onset Alzheimer’s” (now often referred to as “Younger Onset Alzheimer’s).  He did several tests right there with Lee and asked him a number of questions. The other doctors also asked questions.

Dr. Miller advised Lee that he would have to retire. Lee didn’t think that retiring would be necessary. Eric asked Dr. Miller, “Would it be feasible for my Dad to get another job? He thinks that all he needs to do is get another job without stress.” Dr. Miller advised Lee that retirement was a must. He would not be able to work again. He could get another job and not remember what he was doing one day or why he was there. He recommended doing any of the things that we really wanted to do in the next couple of years.

Even though I was expecting to hear something like Alzheimer’s, it was still mind numbing to actually hear it. Dr. Miller asked if Lee would be willing to make a video for students. He wanted to demonstrate a highly functional, articulate younger than usual person with Alzheimer’s. Lee readily agreed.

We went back to the hotel and called our daughter. Even though she too knew the probable outcome, she was in tears. We were all both physically and emotionally drained. The next morning Eric headed back to New York and we started the four hour drive home.  We talked a little but were really feeling the weight of the diagnosis and lost in our own thoughts.

Forward to today: On most days, I understand and accept the diagnosis. Some days, however, I wonder if there’s been a mistake. For a brief, shining moment our world seems normal.  Then in the blink of an eye, we’re back in the reality of the situation. But while Alzheimer’s complicates our lives, it doesn’t end them. We try to live more in the present and to educate ourselves as much as possible about the disease. Knowledge helps us cope. We  attend a support group for people with early-stage Alzheimer’s and their care partners,  and we volunteer for the Alzheimer’s Association whenever possible. They give so much too so many that we like to give back whenever we are able.

Read Lee’s experience receiving a diagnosis of younger-onset Alzheimer’s.

Blog author Val Ferrero is a Senior Admissions Advisor with California Polytechnic State University in San Luis Obispo.  In 2008, Val’s spouse Lee Ferrero was diagnosed with Alzheimer’s disease. Since that time, Val has committed herself as a care partner and advocate in the fight against Alzheimer’s. Val and Lee have been married for 41 years and together have 2 children and one grandchild.

Oct 312011
 
Scott Russell, Alzheimer's Association Board Member

November is National Family Caregiver Month, and I wanted to share some personal thoughts on the subject of caregivers.   I was a caregiver for my father, who passed away from Alzheimer’s 15 years ago, and I was diagnosed with the disease two-and -a-half years ago.

The past.
It has been almost 25 years since my father started to exhibit the signs of dementia.  Back in those days, Alzheimer’s was not well- known by doctors and certainly the general public.  Our family did not know what was wrong.  Like many caregivers, my mother was frustrated — irritated at his behavior, and at times angry.

My Father did not know what was happening, only that things were not right. He felt emasculated and often resorted to covering up his failings of memory and inability to do simple math (like figuring out the tip after dinner); he became isolated and depressed.

Unfortunately, many friends retreated from him as time went on, as they too, did not understand the disease.  They were afraid.  My father was afraid, too, but hid it well — at least for a while.  I believe that if we had known, had he known, had his friends known, we all would have been MUCH better at dealing with the disease. Of course, knowing is one thing; having the resources available to help people with the disease and caregivers cope is another.

Fast forward to the present.

I was in denial when I was diagnosed with early-onset (also known as younger-onset) Alzheimer’s until I received the diagnosis a second time.  Of course knowing is not easy, and I, too, went through some severe depression as I struggled to cope with its impact.

But now, with resources available through the Alzheimer’s Association, my caregivers (my wife, two sons and extended family) are much better at coping with this disease alongside me.  As a matter of fact, they are FANTASTIC.  And I have gained, too.  I am OPEN about my disease, and when I tell people, they embrace it, they do not retreat.

I am so proud of my family’s support in so many ways. My wife, Amy, has been a huge support for me.  On a daily basis, she reminds me to take my medicine, helps schedule my appointments, and provides transportation since I no longer drive. Amy encourages me to work nearly every day on the things that mean a lot to me, including daily hikes with the dog, exercising at the gym, and most importantly, painting the Alzi Animals (stuffed animals that I buy and paint for donations at Alzheimer’s Association events). Amy is always there to support me regardless of the occasion. I could not make it without her!

My two sons, Josh and Nick, inspire me to make the most out of the quality time I have left.  They encourage me to live the healthy, holistic life that means so much to me and keeps me chugging along.  Together, we hike, snowboard, and whenever we get the chance, play chess to keep my mind active.

For me, the one quality that keeps me happy and maintains my positive outlook on life is my family’s sense of humor!!  Being able to talk about my limitations with humor takes the edge off for me and my caregivers.  Maybe not all families use a sense of humor in their daily lives, but if I had to recommend just ONE thing to caregivers, it would be to use that sense of humor in a positive way, because it can excite the mind, defuse delicate situations, and makes us all smile a bit more every day.

My experience has taught me to embrace this disease, wave the purple flag and ADVOCATE for those who are affected. During National Family Caregiver Month it is especially important to acknowledge and celebrate those caregivers who know and love us, and help us cope with this disease in uniquely personal ways.

Scott Russell is a member of the National Board of Directors of the Alzheimer’s Association and the Alzheimer’s Association 2011 Early-Stage Advisory Group. Diagnosed with Alzheimer’s in 2009 at the age of 60; he is committed to raising awareness about the stigma attached to Alzheimer’s and the need to address this disease aggressively. Scott lives with his wife, Amy, in Ridgefield, Connecticut.  They have two sons, Joshua, an environmental activist (age 27), and Nick, a professional snowboarder (age 23).

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