Alzheimer's at 36

[ksun]

This is heartbreaking, really. I've had many Alzheimer's patients over the years, and my childhood neighbor recently passed from complications of it at age 60. 


www.9news.com/story/life/2015/11/02/my-husband-was-diagnosed-with-alzheimersat-36/75031288/


Note: This story originally appeared onRedbook.



If I had known that every day I would lose a piece of Jason, a lot of our days might have been different. Maybe I would have not cared so much about the small stuff. Treasured each moment. Loved him more. But I just didn't know.



The first time I saw Jason, he was playing the guitar in the band at church at our college. I was a freshman and he was a junior. He was really cute; he had these big blue eyes and great dimples. We went on a weekend retreat with our youth ministry group, and I came back thinking he was so funny. Afterward, I wrote in my journal, I think I met the guy I want to marry.



Jason was so romantic; he'd buy me flowers and write me notes. Most people just sign their names in cards, but he'd underline parts. I saved every ticket for every movie, concert, and church program we went to and put them in a memory box, my box of treasures.



Jason and Kamara Manthe

Jason and Kamara Manthe (Photo: Kamara Manthe)

After we'd been dating a year, we started talking about marriage. We talked about getting old together, having a house with the white picket fence, and lots of grandkids. It'd be Jason and me sitting in rocking chairs on the porch. Around Christmas 2001, we went to Jason's dad's house to exchange gifts. When I walked in, I was stunned. Jason had decorated a Christmas tree with 100 lights and about 50 red roses. He sang a song he'd written for me: "I never believed it could happen to me / I've heard it in songs and I've watched it on TV / Now I've met you and all is complete…"



At the end of the song, he proposed. "There's no one I'd rather spend my life with," he said. Of course I said yes. I couldn't imagine not being married to Jason. I was 25 when I got pregnant with Mya and Matthew, our twins. During our first sonogram, when two circles showed up instead of one, Jason turned white as a sheet. "Two!" he said. He was so excited.



When I was put on bed rest at 27 weeks, Jason was amazing. He'd go to the store, cook dinner, and play board games with me afterward. And he was so protective. If I tried to get up to brush my teeth, he'd say, "No! I'll bring it to you!"



Clockwise from left: Jason with Mya; with Matthew;

Clockwise from left: Jason with Mya; with Matthew; singing to twins Mya and Matthew (Photo: Kamara Manthe)

After the twins were born, Jason cared about the smallest details. I kept a tight schedule, and Jason was wonderful about all of it, from diaper changes to bedtime. He'd read to them and, when they got older, rolled around with them, wrestling. He videotaped every minute of their lives. Before putting them down, I'd go in and see him snuggling with them, singing.



A DIFFERENT MAN



I started to notice changes in Jason in 2009, after the birth of our third child, Noah. First he began to lose interest in his job. For eight years, he'd been one of the most beloved teachers at his school. He adored working there. Then, just like that, he wanted to quit. People were shocked, and so was I.



I wanted him to be happy, so I supported him. He decided to work for the fast-food chain Chick-fil-A, which is run by Christian owners, with the goal of becoming a franchise operator. Then, a couple of months in, Jason switched gears again. This time he wanted to try out for our town's police department.



At first, I was encouraged. Jason seemed to like the challenge. But soon I learned that he was struggling. Some of the wives of guys at the academy said their husbands would joke about how easy it was, but Jason always complained that the work was difficult. His bosses told him to write his patrol reports faster, which stressed him out; he started losing weight and became anxious. "I can't do this," he'd say. Sometimes he'd cry before shifts, which was weird because he'd never been a crier.



After about 11 months, Jason quit the police, too. Around that time, he came down with a skin infection after getting a mole removed. He had to be in the hospital for two weeks. That's when I noticed him saying strange things. The nurses would ask, "How did you get this infection?" and he'd answer, "I've had two doses this morning." We chalked it up to his meds, but I worried.



Soon Jason began to struggle with memory. He'd been a football and basketball coach when he was a teacher, so he decided to help a friend running a sports program for preschoolers. But Jason couldn't keep the schedule straight. He had to write notes on his hand to remember when and where to show up. And his forgetfulness got worse. Once Jason was driving us to a baseball game and went the wrong way down a one-way road. Another time, he walked Mya across the street for a playdate and got lost coming back. The police brought him home.



Around Christmas 2012, Jason went outside to put the lights on the house, a job that usually took an hour; he spent four hours on it, then chucked them into the garage. "These stupid lights!" he yelled. I remember him putting his face in his hands and asking, "Why is this happening to me?" He looked so broken.



QUESTIONING EVERYTHING



I had never doubted our marriage, but by then I knew something was wrong. Jason blamed me for things, saying that I was too hard on him. At times, I thought, 'Maybe it's me.' We were barely talking. He'd also gone from being a doting dad to being indifferent. I had become pregnant with our daughter Kinsley, but he stopped going to my ob-gyn appointments with me. Before, for our kids, hanging with Daddy had meant good times; at bedtime, I'd be trying to calm them down and he'd be riling them up. Now I had to tell him to go play with them.



Divorce had never crossed my mind, but I started thinking about it. We saw a counselor. Privately I told the therapist what was happening, and he recommended that we see a neuropsychologist. That appointment led us to a neurologist, and that led to a dozen other appointments and tests. Ultimately our neurologist helped us get an appointment with the Mayo Clinic, in Minnesota. In October 2013, we went. Jason went through days of tests, including PET scans of his brain. The night before our meeting with his doctor, I logged in to his online Mayo patient records and saw his results. I don't remember the exact words, but the message said that his brain images were consistent with those of someone with Alzheimer's. It felt like someone had punched me. Lord, I prayed, panicking, please help us through this. I jumped on Google. No one in Jason's family had had Alzheimer's. I just couldn't understand.



I fell asleep with a sliver of hope that it wasn't true. But at Jason's appointment, the doctor confirmed it. Later, I asked Jason if he understood. He didn't respond, just nodded and cried. That night, we held each other. I tried to sleep, but all I could think of was how we were going to handle it.



At home, we sat the kids down. "We found out what's wrong with Daddy," I said. "He's not going to get better." They cried, but I don't think they understood what it meant until months later. When that day came, Matthew asked, "Wait, do you mean Daddy will die?" I had to say yes. "We all die eventually," I said. "Only God knows when. But we can't worry about it. We're just going to love Daddy."



The family last year

The family last year (Photo: Kamara Manthe)

FINDING WAYS TO HOLD ON



After the Mayo visit, Jason began to forget how to take care of himself, like how to shower. I showed him and he copied what I did, scrubbing his head, lathering his body. Over time, I began doing it for him. Then we switched to baths.



In time, Jason lost the ability to speak. I remember the first day he didn't know my name, and the day when we were looking at pictures and he couldn't remember the names of our kids. That was one of our worst days ever.



Jason's doctors told us he couldn't be alone anymore, so we found a day care facility for him nearby. Our days were crazy: I'd get up at 4:45 a.m. to get the kids and Jason dressed and ready for the day. I'd leave at 6:45 a.m., drop off Kinsley at her day care and Jason at his, then head to our kids' school, where I also taught. My coworkers were making dinner for us two nights a week; I'd stretch the leftovers to cover four nights. Then we'd do baths and bedtime. Around 11 p.m., I'd climb in next to Jason and usually fall asleep crying.



Jason's day care was too expensive to afford on my teacher's salary. At one point, I applied for food stamps and was on the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC). That's where our community saved us. A friend held a fund-raiser and put it on Facebook, which triggered more events: a garage sale, a spaghetti dinner, a fund-raiser at Jason's day care. We raised thousands of dollars.



Whenever I've felt sad, someone has done something amazing. Last Valentine's Day, people brought me gifts at school. My friends from Arizona came out for my birthday. For a while, every week someone came over to stay with Jason so I could go do something for myself. A neighbor pays to have my lawn mowed, and my church covers my therapy sessions, which are discounted by my doctor. It's by the grace of God that we're where we are now.



Seeing their daddy get sicker was weighing on the kids, so in April I decided to put him into long-term care. In May, my mother-in-law moved in with us; she spends every day with Jason. I take the kids to see him once or twice during the week, sometimes on a Saturday and always on Sunday after church. While the kids play outside, I sit with him. We look at pictures and I tell him stories about life at home. I can still make him laugh. I give him a look, nudge, or grab his knee, and he'll smile.



THE WAY WE WERE



The kids understand that we don't know how much longer we're going to have Daddy. I answer their questions as honestly as I can. Matthew and Noah were jumping on the trampoline the other day when I heard Matthew say, "Don't hit me too hard on the head. I don't want my Alzheimer's to come out." I think about that. I don't want them to be afraid.



I'm trying to help them remember their dad the way he once was. Matthew loves to impersonate characters like Grover from Sesame Street. Jason used to be great at doing voices, so I'll say, "That's something you get from Daddy." At Jason's facility this summer, the staff asked the kids to share a memory. Mya talked about the daddy-daughter dance she went to with Jason last February. They slow-danced to "Butterfly Kisses." She said it was the best night of her life.



When this journey began, I remember asking, Why, God? Why Jason? Since then, I've found some peace. I've received so many letters from people whose lives he touched, who said, "Jason was my son's favorite teacher." His life was cut short, but he made an impact.



You don't know where your life is going to go when you take your vows, "…'til death do us part." I never could have imagined that this was how it would end. But knowing how great the good times were, I wouldn't change anything.



Jason was a loving father and caring husband — my best friend. I have to trust that this is part of God's plan. And I will love and think of Jason forever.



As told to Alexandra Rockey Fleming



What to know about younger-onset Alzheimer's



The facts

Typically Alzheimer's affects people later in life. Still, an estimated 200,000 Americans suffer from the younger-onset version in their 50s, 40s, and occasionally 30s.



Who's at risk?

Anyone can develop Alzheimer's at a younger age, though it's unusual. While some develop the common form of the disease (for which there is no single known cause), most people who exhibit it early have a family history. Certain gene mutations are associated with hereditary early-onset Alzheimer's.



Can you prevent it?

Minimizing stress, getting regular exercise, eating healthily, staying social, and engaging in brain-boosting activities (like doing crossword puzzles) may delay symptoms and can help you stay sharper longer. Find out more on the Alzheimer's Association's website, alz.org.



Photos courtesy of Kamara Manthe



This story originally appeared in the January 2015 issue of Good Housekeeping

[darnkatz]

Alzheimer's fucking terrifies me. Early onset? Even more so. I feel horrible for that family and all of the others who suffer through this.

[Michelle]

nope. not reading it. cannot handle it.

[ttt]

I think it's a travesty how little, relatively, we spend on Alzheimer's research. I think it has got to be one of the absolute worst and most horrible diseases there are. Unfortunately, it doesn't have the political might and star power behind it that AIDS and breast cancer do.

[twotrue]

Nov 2, 2015 20:32:31 GMT -5 Michelle said:

nope. not reading it. cannot handle it.

I was about to write the same thing. I got about 3 paragraphs in and stopped. I watched my maternal grandmother die of this horrible disease. Every time my mom repeats herself I have to convince myself it's not Alzheimers. If I'm ever faced with disease I hope options for dying my own way are available to me.

[Deleted]

Tears streaming down my face.
This is heartbreaking.
And also so nice to hear about all the people that help her.

[One Girl In All The World]

Nov 2, 2015 20:32:31 GMT -5 Michelle said:

nope. not reading it. cannot handle it.

Ditto.

I'm going to go bury my head in the sand and pretend I never even read the title of this. 

[gpw]

Nov 2, 2015 20:43:21 GMT -5 twotrue said:

Nov 2, 2015 20:32:31 GMT -5 Michelle said:

nope. not reading it. cannot handle it.

I was about to write the same thing. I got about 3 paragraphs in and stopped. I watched my maternal grandmother die of this horrible disease. Every time my mom repeats herself I have to convince myself it's not Alzheimers. If I'm ever faced with disease I hope options for dying my own way are available to me.

This is exactly my thought. 

[miniroller]

I admire this woman more than I can say. To be able to just cope with the day-to-day of these struggles is beyond impressive. And yet she's doing so much more, which may very well be where she finds the peace that she seems to have thankfully found. I'm as proud of a stranger as I can be.

[erbear]

That is a super sad story

[nursewife]

So heart breaking. I can't imagine going through that. The mom of a friend from university had early onset Alzheimers in her 40s. I always felt so awful for my friend, that while she was in high school and university, her mom was completely dependent on others for her care. I just can't imagine the stress that is on a family. It is such a cruel, devastating disease.

As twotrue said, I hope there are options in the future for those that have expressed their wishes about not wanting to live with that disease.

[sparrowsong]

I had no idea you could even get Alzheimer's that young. Terrible!

[electricmayhem]

I saw this article when it originally came out in Redbook; Jason died last October.  How sad and frightening for his family.

[cap]

That's so completely heartbreaking.

[aurora]

This is terrifying.

[mcfelix]

Absolutely heartbreaking.

[WOT?*]

My father and his mother both had Alzheimer's. I thank God that my dad had mild to mid dementia for the most part before Alzheimer's struck in full. He died after about a decade of memory issues, a bit over one year of physical incapacity and a year of being bedridden. His mother was mentally incapacitated for a decade and bedridden for another decade. God help me if I develop it; assisted suicide had better be an option for me. The alternative terrifies me.

How devastating for him and his family.

[ttt]

On this topic, this article is incredibly moving, as well as heartbreaking. I think it was posted on here a while back but it seems appropriate to share it again. It's about a college professor who learns she has Alzheimer's and devises a plan for ending her life when it gets bad enough. Obviously it is very emotional and very sad:

mobile.nytimes.com/2015/05/17/magazine/the-last-day-of-her-life.html?referer=&_r=0

[bimbi284]

I should not have read that

[omgzombies]

I couldn't get through it. My father has Alzheimers and it's heartbreaking.

[nikki25]

This article resonates so deeply with me. I had 4 aunts die from this before their 40th birthday. My last aunt to pass was in a nursing home by the age of 33 because she was completely unable to take care of herself and became too much for my uncle and their younger kids. 

My pop-pop, who is not actually blood related to me as he married my grandmother after her divorce and his wife's death, was the father of 5 daughters; 4 out of 5 passed. My surviving aunt spent years in an attempt to figure out what was going on. It is presumed that her mother passed from this but she was diagnosed as mentally ill in the 50's which later was determined to be a genetic early-onset dementia. 

After several years, she found a geneticist at the University of Chicago who found the defect on the X chromosome. All the aunts that were still alive were tested and had the defect; the surviving sister does not. Not only did they lose their minds but their bodies also began to deteriorate at a very fast pace. There is no true name yet for their defect as it is very new but to watch these once amazing women deteriorate so quickly it so horrible. 

Now that the defect is known and can be tested it puts all my cousins in a horrible position on whether or not to be tested. There is no cure. So, is it better to know or not to know? My heart breaks for them. 

I know my surviving aunt's daughters were tested and were negative. My other aunt has 5 daughters and am not sure what they all decided. My other aunt, the one who passed recently, has a college age daughter and son. Both have not been tested. My female cousin mentioned recently that if she gets to the point of having children she may want to know as she doesn't want to pass it along. Such a fucking horrible situation. 

[tacosforlife]

OMG, nikki25. That is horrifying. I am so sorry for all your family has been through.

[fuckyourcouch]

How incredibly awful.
I'm terrified of this. My grandmother died of it this year and I'm so scared for my dad and myself.

[nikki25]

Nov 3, 2015 12:10:07 GMT -5 tacosforlife said:

OMG, nikki25. That is horrifying. I am so sorry for all your family has been through.

Thanks It really is horrible.

We are actually having a walk next week in Philly for Alzheimer. It is a huge walk to raise money for research. My cousin started a non-profit and made these amazing shirts in honor of her mom. She also has been on the news attempting to raise awareness. She is an amazing person I really hope more money is provided for research especially since the baby-boomers are aging and this will not be a disease which goes away. 

[miniroller]

Oh my goodness nikki25!! I cannot imagine making that decision, to know or not. That would be so scary, & I'll certainly pray for medical advancements on this new-found disease.

[terpsfan]

We've got a dear family friend in hospice, will go any moment now. He's 60 and was diagnosed 10 years ago. Was an amazing pediatrician, full of life, wonderful conversationalist. Has been a shell of a person for the last 7 years. This is a horrible, horrible disease.

[curbsideprophet]

That is horrible

[nikki25]

Nov 3, 2015 12:31:32 GMT -5 terpsfan said:

We've got a dear family friend in hospice, will go any moment now. He's 60 and was diagnosed 10 years ago. Was an amazing pediatrician, full of life, wonderful conversationalist. Has been a shell of a person for the last 7 years. This is a horrible, horrible disease.

How horrible

[pugz]

I thought early onset was like, 50, not 30s

[simpsongal]

Fuck Alzheimers.