From Sally

Hi,

My name is Sally.  My dad is 83 and has been diagnosed with Alzheimer's for more than ten years.  Mom and I were just talking yesterday about when he was officially diagnosed. Isn't it funny how we can't remember that?  I do remember Mom calling me, panicked, that he had received the news. She was so upset.  I was not.  Probably because I did not really know what was in store.  Now I do.  

My dad was a social worker.  He loved to meet people and hear their stories.  You know how so many will interrupt you to tell you about themselves?  Dad never did that.  He always asked MORE questions about you.  He was an avid biker and sailor and camper and skiier.  He would work in the backyard until after dark.  He was always working on a project.  He was brave.  

Now, he sees a bicyclist on the road and will say, "that is crazy."  I prod his memory and tell him how he and I used to bike 25 miles to raise money for the Recycle Center and how he organized an overnight bike trip for my Girl Scout troop and he says, "I don't remember."  I talk to him about how we camped along streams in the Rockies and saw moose, and he stares at me blankly; he does not remember.  I point out sailboats on the pond.  He does not remember.  I tell him we skiied the bumps in Colorado and played board games at night afterwards.

I had to make him get off his chair this winter to go for walks. It was a long, cold winter here in the midwest.  He was afraid of the snow and ice on the ground.  He would tell me he couldn't walk anymore, after we had walked 100 feet. He insisted he could not eat or swallow.  He refused to get out of bed.  

  

I miss talking to him.  But more than that, I cannot believe the physical toll on his body.  He walks once a day when made to.  He needs to eat pureed food to avoid "silent aspiration" (the cause of two episodes of pneumonia). Sometimes, he won't feed himself.  He does not shave himself or brush his own teeth.  He rarely goes to the bathroom by himself.  Now, he has taken a turn for the worse.  He has to live in a memory care unit.  Mom could not take care of him anymore 24/7.  I tried to help as much as I could, but she lived with him and I still have children at home.  

People always ask me, "Does he know you?" and I say, No.  They think that's the worst part of the disease, when in fact, it was the easiest thing to lose.  The hardest thing is watching this vibrant, smart, fun man become a shadow.  

From Krista in Connecticut

My name is Krista and I live in Meriden, CT.

My mother was diagnosed with early onset Alzheimer's Disease a year and a half ago at the age of 61. It all began when a co-worker called my sister and told her something wasn't right with my mom. Needless to say she was correct and we are very thankful she was so caring and thoughtful to call us. My mom was unable to complete simple tasks at work. Since my maternal grandmother had Alzheimer's Disease in her early 50's we were immediately concerned that this what was wrong with my mom. It took a year and 4 different physicians to finally diagnose my her. She was given a PET Scan which was instrumental in diagnosing her problem as Alzheimer's Disease.

I know how devastating the disease can be after witnessing the decline of my grandmother and I understand my family has a long road ahead of us. My sisters and I are all fearful that this may be our fate as well someday. My mother is taking medications (Aricept and Namenda) which promise to slow down the progression of her cognitive decline. These medications were not available when my grandmother was suffering from the disease. We are pleased with the results so far, she has had minimal decline and even a recent increase in her most recent cognitive exam. Our hope as a family is that people like you continue to make a difference. I am confident that someday there will be a vaccine or cure. Hopefully sooner than later.

From Debbie in Westfield

My mom was the sweetest, kindest person I have ever known.  She was so generous and cared so much for others.  When she started to get ill the family ignored it or played along for a while.  I couldn’t ignore it anymore when she started to lose weight and didn’t get dressed into clothes but stayed in her nightgown for days.  It was the hardest thing in the world to take her to her primary care physician and say the word “Alzheimer’s” in front of her, I felt like I was giving her a death sentence.  Of course I know that I wasn’t the one who gave her the disease but I felt like I was the one who brought the whole idea into her life…. She was pretty well along in her disease by then and she was living in denial like the rest in my family at that point.  After the doctor’s visit a neurologist came to my family home to give her a simple test and I was amazed to find out that my mother had no idea what day it was, was month it was or even what year it was!!  I think we all take for granted that the people around us should just know these things but these are the simple things that disappear without anyone really knowing!!  Seems like it was all downhill from there.  She was already in stage 2, she rarely came out of her bedroom after that….she was scared and confused and regretfully I didn’t do much to comfort her.  I was so concerned that she was safe and fed and clean that I didn’t even think that she needed to talk to someone, that she might have “feelings” about her illness and need to talk about them.  I regret the talks that I didn’t have with her.  It didn’t take long before she was in Western Massachusetts Hospital where she lived for the next 5 years.  We were very lucky to get her into such a great program developed just for Alzheimer’s patients where she was safe and well cared for.  Earlier in her disease she had a stroke which left her on a feeding tube.  She had to learn to eat again and quickly so that she did not depend solely on that tube to live, we looked ahead and didn’t want that to be what kept her alive when the disease progressed to the point where she lost her chew…. I visited her daily (at least once a day) to feed her and to make sure that she was always clean and warm.  I walked through that door every day with a smile on my face and greeted her with all the love and respect that she deserved, it didn’t matter to me that she didn’t know who I was, I knew who she was and knew that the smile on her face was the most important thing in both of our worlds at the time.  Slowly she lost her walk and once she was confined to a wheelchair they asked us to find her a nursing home.  She lived out the last 3 weeks in a nice little place.  She died early in the morning on January 17^th, 2007.  It is a day I will never forget!  7 years of struggling, first struggling to keep her safe then her struggle to know who I was, these struggles were so important until the next harder one came along, her struggle to talk and to chew and then to walk, it all ended with her struggle to draw her last breath…. I stayed up with her for 2 days praying that she would have even 1 moment of clarity so I could tell her all the things that I didn’t say when I was scrambling to take care of her.  It didn’t come.  To anyone out there who loved someone with this disease I urge you to talk now, don’t regret later what can be said now, and don’t assume there will be time…. Alzheimer’s has its own schedule.

Love you Mom!!

From Celia in Massachusetts

My Grandfather was diagnosed with Alzheimer's disease the year before I was born. Because of that, Alzheimer's was always part of his identity to me.  He was my grandfather, and I loved him.  I remember him playing with me tirelessly.  Actually, he out-played me.  He could push me back on forth on the rocking horse in my grandparents’ garage forever.

Of course, this is my memory of him from the earliest stages of the disease, when his body was still strong and his mind able to process enough to keep me thoroughly entertained.  I didn't notice what Grandma, Mom, Dad and my aunts and uncles did.  I didn't see "decline."  Just Granddad.

The contrast between those early memories of the grandfather laughing, pushing me on the rocking horse and eating all the watermelon to the one pacing the circular hallway of the Alzheimer's unit is stark. It was as if someone had stolen all these pieces of him and we just had to wait for them to give them back. Because Granddad had good days and bad days, I don't think I understood that he wasn't getting those pieces of himself back.

The Alzheimer's unit scared me.  People were very friendly to me, but over-attentive.  I didn't understand why some residents seemed as capable as my parents and others in so much pain.  I liked visiting Granddad though.  Despite all the scary transformations he went through, I never felt like who he was changed.  His eye contact when I walked into his room was just as focused and purposeful, long after he stopped saying my name.  I miss Granddad, and I desperately wish I could have known him free of this horrible disease.

It wasn’t until I was in high school and had spent time volunteering in the Alzheimer’s unit of a nursing home at home that I understood the breadth of ways people fought with the disease and how to connect with every one of them. Now that I've studied Alzheimer's and seen it manifest itself in other victims, I feel even more strongly about doing anything I can to support finding a cure for Alzheimer's.

From Dolores in Connecticut

Hi,

My name is Dolores.  I am Glenn's mother.  My husband, Dick, was diagnosed with early-onset Alzheimer's Disease on June 28, 1989.  He was 55 years old. He died on July 23, 2002.  I will be running with Glenn on May 19th, not physically, but in my mind, my heart and my prayers.

My story:

In 1989, a co-worker and good friend of my husband called me on two different occasions to tell me that Dick needed a vacation.  I didn't know why he told me that because Dick and I were having a wonderful life.  It wasn't until Dick told me he thought he had had a stroke, and a good tennis player friend of mine was struggling with a brain tumor, that I easily talked my husband into getting a physical because I was worried about a tumor possibility.  I got a call from the doctor on June 28 that Dick was diagnosed with  Alzheimer's Disease.  It was only after the diagnosis that I could go back a couple of years and noticed losses but at the time, the losses seemed insignificant.  The degree of loss he had at home would be significant in the office. The co-worker was right.  He saw what was happening to my husband before I did.

There is so much I could say about the toll this disease takes on the victim, the family, and the country, physically, emotionally and financially but  I decided instead to focus on the horror the disease inflicts on the victim.

In the past, people have told me that the caregiver suffers more than the victim.  It's nice to be recognized and given credit, and yes, we do suffer, but there is no comparing the caregiver's suffering with the victim's suffering.

There are two things I would like to say.  First, we have all experienced the frustration of misplacing keys, cell phone, or anything else.  IMAGINE IF ALL ASPECTS OF YOUR LIFE ARE "MISPLACED, DAY AND NIGHT".

Second, we take care of ourselves all day long, 24/7.  If we're hot, we take off our sweater.  If we're cold, we put one on.  If we're thirsty, we drink.  If we're hungry, we eat.  If the covers come off us at night while we are sleeping, we know how to get them back on (or play tug of war with your spouse) and not lie there cold and shivering all night..  If we're in pain or discomfort in any way, we can deal with it and not have someone else guess what your needs are.  I don't know how long my husband suffered with a toothache, weeks or months, until blood drizzled out of his mouth one day when I was with him.  The tooth was abcessed.  He had to wear a helmet all day because he was so bent over that he bumped his head constantly on the walls or corner of walls.  It wasn't until one day I tried the helmet on and got in excrutiating pain immediately because the helmet made me feel my head was in a vise.  He wore this helmet for months.  I thought he was just agitated,  I didn't know he was in horrible pain. I could go on and on.  This all sounds very insignificant but it is not.  THIS DISCOMFORT OR PAIN IS ALL DAY LONG, EVERY DAY, EVERY MONTH AND EVERY YEAR.

Please join me in contributing to the Cure Alzheimer's Fund.

Thank you.

Dolores

From Glenn in Massachusetts...

My dad and I only talked with each other about his disease once, and just for a moment.  This remains one of the biggest regrets of my life.  I had been living out of state for several years, and I easily explained away the early Alzheimer’s symptoms I noticed, thinking his confusion was laziness, since he was such a sharp man.  Upon his diagnosis, he was already significantly impaired, not able to follow simple three-step instructions or make up a sentence spontaneously, yet this news was a total shock to me.  He was so young, so healthy; he was so unlike the image I had of Alzheimer's.  I remember following him into his room upon hearing the news, wanting to make some sense of what was so incomprehensible to me.  A chat with my dad had always been a salve that helped soothe whatever turmoil I was going through; I wish I had been better able to reciprocate, to help him. After some resistance to talking about his diagnosis, he said to me, “Make sure mom is taken care of.”  I cried, and he cried, and that was the end of our talk and the only time we spoke, albeit indirectly, of his disease. 

On my visits home during the early stages of his illness, I was so eager to engage with him as the dad I always knew that I wished away the disease.  I had two young daughters, and he would play with them with animation and patience, pushing them on a rocking horse as long as they wanted, for example.  He played with them as if this were the only thing in the world that mattered. The disease progressed, and I was consistently slow to notice how much he was struggling. He was so good at masking  his limitations and I was so complicit in seeing only what was still intact--what I wanted to see.

In just a few years, so much of what had always defined my dad was lost to the disease.  Yet, in spite of this, it was always clear to me that he was trying his best, regardless of the stage he was in.  As he became incessantly worried, then paranoid and agitated, then aggressive—these things all so precisely opposite his nature—there was always still a dignity to be seen by anyone who was open to see it, and not just those of us who clung to memories of his past goodness.  Debilitating physical symptoms compounded his cognitive decline, and alleviating his physical discomfort became a 24 hour a day mission for my mom and everyone involved in his care.  He never slept in bed; he paced all night long; his hands were constantly clenched and soon deformed; he walked with his torso parallel to the ground, eyes cast down, so that he needed a bike helmet to protect his head.  When tired he would often just crawl, but he would never stop, save for occasional catnaps when exhaustion overtook him, and he would be at peace for a short while.  For the last several years of his life, he could not talk, but there was a “knowing” quality that he had—I don’t know what it was or how better to describe it.  You could hear it when he sighed and see it in his eyes.  To an outsider, it might have seemed as if Alzheimer’s robbed him of all his dignity, and surely it took away all those attributes most would think comprise dignity, but the truth is that he was always in there, a beautiful man, my dad, and that is the most painful part.

I often think that if people really knew the full costs of Alzheimer’s—all the money, yes, but much more importantly all the pain and the loss of those things we most treasure as humans—there would be so much more funding for research.  Yet, I still feel unprepared to write in detail about the tortures my dad had to withstand, and I don't think “torture” is an exaggeration.  Nor am I ready to post pictures of him from the last several years of his life.  Not because I believe this tarnishes him in any way—quite the opposite.  I am inspired by my dad’s dignity in the face of Alzheimer’s.  My reasons are more selfish.  It took me several years for the image I see of my dad when I remember him to be from when he was healthy and happy, and those are the memories I want to preserve and pass on.  When I look at the pictures we have from his last years, it is shocking to me now almost nine years after his death, seeing so clearly the “before” and “after.”  Alzheimer’s was my dad’s fate, and it is a horrible disease that we need to stop.

I also have not written yet about my mom, who managed more than a decade of trauma with love and grace and wisdom, all while coping with her own deep loss.  My mom is my hero, and she has modeled for me the very highest aspirations I have for myself.