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This is my last post on this blog site. This blog, and all its content, can now be found on WordPress at http://walkingthealzheimersabyss.com/.  Please follow it there. Thanks for your readership over the years,and I promise to update it more often in the future.

Coping with Loved Ones who may Wander

My last post about the Medic Alert bracelet apparently caught the attention of a reporter who worked with the Dallas chapter of the Alzheimer's Association on an article about wandering. It's a pretty good article, but I'm a little disappointed at one small omission. While talking to Bill the reporter asked him about his wandering adventure and he mentioned he saw a road sign for Princeton, and drove that way because he had lived in Princeton, New Jersey when he was younger. That's the first I'd heard of that reason for his going that way, but it's important to note that people with dementia often wander because of some clue to their past.

Peace of mind in a MedicAlert bracelet.

Edited 12/1/2013

According to the Alzheimer's Association, six of ten people with dementia will wander. We've all seen the lighted highway signs: "Missing Elderly" with a license number and description of the car. As I write this Hal Ticknor is still missing, last seen October 11 driving his Chevy out of his driveway, was found by hunters on 11/29 in his car near Seymour, 180 miles northwest of his home in Garland, Tx. Silver Alerts expire when no more leads are found. I know how frantic Mr. Ticknor's family is, because I experienced a similar, albeit much shorter, incident last year.

I was busy grading papers near the end of the semester and against my better judgment let Bill drive to Dallas to get a minor repair at the Volvo dealer. He assured me he knew where he was going, and he promised to go straight there and straight back. Besides, he had his cell phone with him. I let him go and settled in for a quiet afternoon of grading papers, but with one eye on the clock.

Calculating drive time to and from the dealership and time there for a quick adjustment to the bumper cover by the body shop I guessed he'd be gone about three hours. At the four hour mark I called him, but he didn't answer.

Checking my email I saw those alerts from Chase telling me the debit card had been used. I saw that he had been to the Whole Foods Market on Preston Road in Plano, and a little while later a charge popped up at the REI store across the street.

Christmas shopping. Bill loves to shop--always has--so I didn't worry, but I did call him. This time he answered.

"I'm just doing a little Christmas shopping. I should be home in an hour."

At this point I was still too naive about dementia to be really concerned. But when more than two hours passed and he wasn't home--and wasn't answering the phone--I called my friend in the police department for advice.

As he was explaining how a Silver Alert works I saw another debit card alert pop up--this time from Walmart. I mentioned the store number and my friend said "That's not a Denton Walmart."

Now we're concerned. I got on the Walmart website, searched the store number and discovered it was in McKinney--32 miles east of here, and a good 10 miles east of where he should have turned west to come home.

My officer friend called the McKinney PD with the description of the car and the tags, explained the situation, and gave them instructions to hold him and call me if they found him. In the meantime, I was to find a friend to go with me, since one of us needed to drive the Volvo home.

I waited. Now I'm nervous. Forget grading papers. My friend called me back and said McKinney PD searched the entire area around the Walmart and couldn't find him. I thanked him, but before we hung up another debit card alert popped up. This was for a liquor store near The Colony--which meant he was headed in the right direction. I hung up with instructions to call my friend the minute Bill came home, and started pacing the floor. It wasn't long before he pulled up, grinning from ear to ear and bearing treats and Christmas presents.

I'd be lying if I said I wasn't mad and upset. Poor Bill--he never did find the Volvo dealership, either. That was when I knew he couldn't drive anywhere outside of Denton.

Since then we've had a few brief incidents--he got lost walking the dog and a kind neighbor came by the house to pick me up and take me to him. The dog had slipped her leash and he didn't know what to do.

Then recently I found out he had a set of keys to the truck and had been driving himself to the Denton Senior Center, which would be OK except he no longer has a driver's license, and his getting lost in familiar Denton is the reason I clamped down on his driving.

Thanks to the MedicAlert Foundation and the Alzheimer's Association Safe Return program I now have a little more peace of mind.

Bill and I now have matching MedicAlert bracelets with a purple logo to differentiate them from the standard red MedicAlert bracelets. I ordered them through the Alzheimer's Association because it's a nationwide service for people with dementia, and their caregivers.

The back of Bill's bracelet simply says "MEMORY IMPAIRED " and "My name is Bill."  It has the toll-free number (800-625-3780) and his member ID number on it. He also has a wallet card. If he gets lost again, or has a medical emergency, a call to that number will activate the network, which includes notifying me. They even have his medical information and prescription medicines on file. A large refrigerator magnet has the phone number, Bill's ID number, and instructions.

My bracelet is the caregiver's bracelet, looks just like his, but on the back side says "CAREGIVER FOR ___" with his member ID number and the toll-free number. If something happens to me, emergency responders and hospital staff will know I care for someone, and will activate the network.

I decided to get a bracelet for myself after hearing about a caregiver who was transported to the hospital, and the person she cared for was left alone for three days. I can't take the chance on that happening.

I wasn't sure he'd be happy about wearing the bracelet. He claims he doesn't wander, and hasn't gotten lost "in years" but I know better. So I showed him both bracelets and explained that I wanted him to wear his because I love him and don't want anything to happen to him if he gets lost. Then I showed him mine and explained that if something happened to me, somebody would come take care of him until I got home.

He looked at both bracelets and held them and said "Wow, these are really neat. What a great idea."  I put his on and adjusted it to fit comfortably. He keeps admiring it, and turning it up so it's visible next to his watch. He wants to look at mine often, and proudly showed his off to some friends at church this morning.

I pray he won't wander off or get lost again, just like I pray Mr. Ticknor is found safe prayed for Mr. Ticknor and his family. This bracelet won't keep anybody from wandering, but it will provide additional peace of mind for anyone who loves someone with dementia.

To report a wandering incident, first call 911, then call 1-800-625-3780 for the MedicAlert + Safe Return emergency response line.  There is a fee for the bracelets and the annual service. The Alzheimer's Association has limited funds available to assist families needing to register for the Safe Return program. Contact your local Alzheimer's Association chapter for details.

Some things just take the cake

It's been kind of a rough row to hoe the past couple of months, with school, busted ribs, and an unfortunate situation in which we found out who our REAL friends are (still deciding whether or not to blog about that one--the wounds are still too raw).  But Bill and I have settled into a routine and things have been working out pretty well. Or so I thought.

We're participating in a group called Stepping Stones, which meets every Wednesday and is co-facilitated by TWU Occupational Therapy graduate students and the Alzheimer's Association.  The caregivers meet in one room while our loved ones engage in creative and physical activities down the hall. They seem to have a lot of fun, based on all the noise they make. 

I wasn't sure Bill would enjoy it, but he seems to have fun and engaging with a group of people is good for him. He's made some arts & crafts projects that are now proudly displayed at home. 

Some time before we started going to Stepping Stones I asked him if he wanted to go to the Denton Senior Center. He kind of turned up his nose and said "What would I do all day with a bunch of old people?" 

I dropped the idea and started a futile search to find someone to occupy his time for a few hours a couple of days a week. My therapist had suggested getting a group of eight people together and scheduling them so that they didn't have to commit to more than once every 6-8 weeks or so. She suggested simple things like somebody picking him up and going for coffee, a dollar movie, the dog park, or a museum, or just hang out together.  Simple enough, right?  I can usually get somebody to pick him up for Bible study and Wednesday church, but the rest was harder than I thought. I prevailed on a men's group he's in, and got no response.

Yes, I was frustrated. It didn't help that I read this article about caregiver abandonment. 

This past Wednesday he had a good session at Stepping Stones, then I rushed off to school. Thursday was a day of doctor's appointments and Friday I was on campus most of the day for faculty meetings. (I'm rarely on campus on Fridays.)  I came home about 5:00 exhausted, and needing to freshen up before we went to All Saints Day Mass. Relaxing in front of the TV with a glass of cider I thought I could clear my mind a bit when Bill walked in, hands behind his back, and said "Look what I won!" He produced a cake in a box from Kroger. 

How the heck did he get a cake from Kroger? He doesn't have a driver's license, the car keys are all locked up in the safe, and the nearest Kroger is more than 3 miles from the house.

"Oh really?" I gulped. "Won it where?" 

"You know, where I get together with those guys."  I of course think he's talking about the Stepping Stones group, which is mostly men.

"Bill, that group met two days ago. You didn't bring a cake home with you then." I was trying to be calm, but I knew something was up.

For about the next 10 minutes we had a non-conversation that ranged from "the cake was already in the refrigerator" to "I won it playing a game with those guys at that place we go to." Mind you, I would have remembered bringing a cake home on Wednesday, and all he had was a bag of Halloween candy. I haven't been to a Kroger in weeks, and he's not supposed to be driving anywhere--besides, when he gets into a grocery store he heads straight for the salty snack aisle. A cake is the last thing he'd buy.

I try again. "Where did the cake come from?" He can't answer. It's clear he knows--he has a mental picture of the place, and the circumstances--but the part of his brain that will allow him to communicate the details to me just isn't working. And he's as frustrated as I am. The more he repeats himself and/or changes the story, the more agitated we both get. 

I asked him if he drove somewhere to buy the cake, but he swore he hadn't been driving. I asked him if somebody had brought the cake to the house, but he kept insisting he won it playing a game at "that place I go to where all those guys are." 

This is going nowhere and I throw my hands up in frustration. Then he did something really remarkable.

"OK, I'll tell you the whole truth," he said quietly before walking back into the bedroom. He returned with a set of keys to the truck that I didn't know existed. He handed them to me and admitted he had driven to "that place" and played games and won the cake. 

I reminded him he didn't have a driver's license and he's not supposed to be driving because he gets lost and/or gets tickets for speeding and running lights. He gave me a blank stare. I locked the keys up and we went to church. When I came home I called the Alzheimer's Association's 24 hour help line for the first time ever.

The counselor was very comforting and helpful. She reminded me that the fact he wants to get out and do things is good--many people with Alzheimer's just sit around home. Her words of encouragement and wise counsel were a great help at a time when I was panicked, knowing he was driving around without a cell phone or a clue of where he was going.

After chatting with a dear friend I managed to get to sleep--and slept for about 12 hours, I was so emotionally drained and exhausted. What if I'd come home early and he wasn't there? What if he'd gotten lost? I had no idea what he was wearing, what time he left, or which direction he was headed. How could I help the police find him? There were so many "what ifs" that went through my head, and lately there has been a spate of silver alerts for missing elderly people with dementia. The thought of him driving around by himself is too scary to contemplate. It was less than a year ago that he got lost driving and I had to call the police. Fortunately email alerts on our debit card transactions allowed us to figure out where he was, and he got home safely after several hours of oblivious fun--for him.

Saturday we got in the car and I said "Show me where you went." He couldn't. Initially he said "It's just up the street from that place we go to on Wednesdays."  I drove there, the Martin Luther King Jr. Recreation Center, and we explored the neighborhood. Nothing. He couldn't seem to navigate at all. We tried another route, and ended up by TWU. He described the place as having lots of green around it and a basketball court. I began to wonder if he'd ventured all the way up to NorthLakes Park, which is on the far north side of town. 

I did use this as an opportunity to point out exactly why he shouldn't be driving, and in that moment he agreed and seemed to understand the danger he could be in. But that too will pass, I'm sure.

We returned to the MLK center and he went inside to ask for directions. He came out with a brochure for all the parks facilities, and we started driving around. The second one we went to was the Senior Center, downtown near the Civic Center. We had already driven past it twice on our earlier wanderings--I've never been there and only vaguely knew where it was. But this time he recognized it. It was closed but we got out of the car and walked around, looking in the windows and checking out the place. It looks nice. He said this was definitely where he was, and he wants to go back.

Assured that this was where he spent part of his Friday, we went home, and I started looking up their activities. He's interested in spending time there--I just need to arrange transportation for him. But if this is where he wants to spend part of his days, playing games, reading, doing arts and crafts, I'm all for it. Anything to keep him busy, mentally stimulated, and socializing in a productive manner and in a safe environment.  And maybe it will give me a little respite, too.

A Wakeup Call if you're a caregiver....

Everybody keeps telling me I need to take care of myself. I've even mentioned it in previous blog posts. But I didn't realize how vulnerable I was until Tuesday, August 20.

I was enjoying a very short break between teaching a demanding summer class and what will be a tough, long fall semester with a full lecturer's teaching load (four courses) that includes two large classes, one of which I've never taught before. I was still feeling energized from Monday's day-long faculty retreat, when we brainstormed with our new dean about the direction of the Journalism school. I was feeling good, although a bit stiff from sitting so much. (Yes, I need to get that sciatic nerve looked at.)  So instead of my usual morning shower, I decided to relax with a long soak in the tub.

After mixing a therapeutic bath cocktail of Epsom salts and aromatic elixirs I settled in with Marie Marley's book "Come Back Early Today," a poignant, loving memoir of her years as an Alzheimer's caregiver to a brilliant, urbane man who was the love of her life--kind of like Bill and me. I knew exactly how much time I had to read before I needed to get dressed and drive down to UTSW Medical School in Dallas for a quick checkup with a doctor involved in the memory research study I'm participating in. Afterwards I had the rest of the week open--free and clear--to work on syllabi, PowerPoints, and other tasks related to the start of the new school year. For the first time in ages I was going to have a leisurely time prepping for classes, and would start the semester relaxed and ready.

"If you want to make God laugh, tell Him about your plans."  Woody Allen.

I still don't know how it happened, it was so fast. I think I was drying off and about to step out of the tub when suddenly, as if by some mysterious force, my right leg went to the left and I went straight down, my torso landing hard on the edge of the porcelain tub. The pain felt like a white hot knife going through my right side, and I was also aware of my knee making contact with something. It took me a minute to catch my breath, and then I tried to call out to Bill to come help me, praying that he was within earshot and not outside cleaning the pool.

He heard my whimper and came running, but it took both of us a couple of minutes to figure out how to get me up and out of the slippery tub without doing any more damage. And all the time I'm thinking "Thank God I didn't hit my head. No telling how long I'd lay here unconscious before he found me."

I sat on the edge of the bed for a while, taking a mental inventory of painful body parts and trying to figure out what to do next. Bill hovered both helplessly and attentively. After about 10 minutes I actually started to feel better, so I took a handful of Aleve and proceeded to get dressed for my appointment. Duty comes first, right?

Less than an hour later I gingerly got into the car, Diet Coke in hand, and drove the 34 miles to Dallas for my appointment. As I waited with the research assistant outside the exam room I began to realize I had been in shock, because the pain was creeping in and taking over my torso. My breathing was becoming labored. I was happy to soon be heading back up I-35, knowing Denton Regional Medical Center was the last exit before the one to my house. Of course, here I am sitting in a medical school

full of specialists and I never once mentioned my accident to the doctor I was seeing. (He's a neurologist--what does he know about ribs?)

The ER waiting room was deserted when I walked in, and I was immediately whisked to an exam room. The pleasant doctor who poked around on me asked if I had anybody to drive me home.

"Nope" I said confidently. "I live about 5 minutes from here." There was no point in my going home first to get Bill, because he's not driving now anyway and we've let his license expire. I had called him to let him know where I was, but didn't see any problem with going to the ER on my own.

"Well, we can't give you any pain meds unless you have someone to drive you home" the doctor said dryly. Looking around, I didn't see any "no cell phone" sign so as soon as he left I started texting friends I thought might be free. My pal Jo was available and arrived just as I returned from radiology. The nurse promptly brought me a pain pill. About an hour later, after being informed I had fractured my ninth rib but there appeared to be no lung or liver damage, I was sent home with a prescription and a manual incentive spirometer to help prevent pneumonia. We dropped off the prescription and Jo took me home and got me comfy on the sofa with pillows, made sure a frozen pizza was in the oven, then retrieved her sister to drive my car home from the hospital. They delivered my painkillers with the car about an hour later, and I went to bed for a fitful night's sleep.

Bill has always been an efficient, attentive nurse. In the 31 years we've been married I've had lumbar epidural steroid injections three times, carpal tunnel and cubital tunnel surgery, a lumpectomy, an artificial disc inserted in my neck, and routine colonoscopies, all requiring some sort of aftercare, as well as the usual colds, flu and pulled muscles that occur from time to time. The morning I woke up incapacitated by vertigo (eventually diagnosed as Meniere's Disease) he was able to take me to the ER. He's always spoiled me and I've probably taken it for granted.

Not any more.

When you have elective surgery or tests you plan ahead, make sure the house is neat and the pantry and cleaning supplies are well stocked. Under normal circumstances, Bill could just jump in the car and run to the store if we ran out of anything.

An accident is unplanned. It disrupts your life, and your schedule. When the roles are reversed and the caregiver becomes the patient, all bets are off. Bill can't jump in the car and buy cat food or juice or milk when we run out. Carryout meals are limited to whatever is delivered. And I'm still not good at asking friends for help.

Bill also doesn't always remember to eat, and unless I set alarms, won't remember when either one of us is supposed to take our meds. The pool pump must be turned on and off, trash needs to be taken out, mail needs to be brought in. Stuff that happens on autopilot when I'm up and about may or may not get done when I'm struggling to get comfortable in a virtual pillow fort with ice packs and Norco addling my brain.

When I went to the ER I checked in on Foursquare, so everybody who follows me on Twitter and Facebook knew something was up. What is usually a narcissistic social media act turned out to be a good idea, because people contacted me to see what we needed. Meals were brought over. I actually turned down help because frankly, I wanted to rest.

This whole ordeal has made me realize I need to be more vigilant about having a well-stocked freezer and a couple of close pals on speed dial in case, God forbid, something happens again. I need to have MY medical power of attorney in order, and figure out a place to leave instructions for a third party to access needed documents in case I can't get to them. I have to take care of myself because, as Father George continually reminds me, I'm no good to Bill or my students if I'm sick.

It's another thing to add to the list, another thing to think about when I'm already thinking for two.

Join my team September 21 as we walk to end Alzheimer's at South Lakes Park in Denton.

If you can't walk with us I hope you'll support my walk (or that of a team member) with a tax-deductible contribution to the Alzheimer's Association. 

This post originally appeared on The View From Little D blog on Friday, August 30, 2013.

It's The Little Things....

I think of that Robert Earl Keen song every time I remember "It's the little things." Of course, his song addresses completely different issues, but you get the idea, especially when you hear the last line of the chorus. And dealing with dementia means the little things add up.

Original image from Skip to my Lou

Like the Amish Friendship Bread fiasco. This food fad has hit my circle of friends, and when Deb posted on her Facebook page that she had starter to give away, I thought "why not"? I like to bake, and Bill has a sweet tooth. It would be a good, cheap way to keep fresh baked goodies around the house, and knowing I'd have to bake something every 10 days would be an incentive to keep at it.

Deb arrived with a Ziploc bag of starter and the instructions. I dutifully put the bag in a container on top of the refrigerator, hung the recipe and instructions on the refrigerator door, and started checking off the days until I needed to feed the starter.

• First Mistake: I didn't put a sign or label on the bag.
• Second Mistake: I didn't explain to Bill what it was.
• Third Mistake: I assumed he'd ask if he wanted to know what it was.

Because I was teaching a summer school class four nights a week I wasn't paying much attention to the kitchen. Bill was handling most of the cooking and cleaning or I was bringing home carryout. But when my Google Calendar texted me a reminder that it was Day 6 and I needed to feed the starter, I happily bounced into the kitchen, ready to dump in milk, sugar and flour.

Except I couldn't find it. The kitchen counters were clean and very free of clutter. The lingering bouquet of white vinegar and Clorox (his favorite cleaning supply) perfumed the air. The plastic bowl containing the baggie I had dutifully mushed every day was gone from the top of the refrigerator. 

I looked high and I looked low. I looked in the fridge, in the pantry, and in all the cabinets. I looked in the office and the dining room. I even looked in the bathrooms. I found the bowl, washed and put away neatly with the pots and pans, but the bag of gooey starter had vanished like Bill's short term memory.

And at that moment, I realized I was learning how to cope with this disease. How so?

I didn't ask him where it was (he wouldn't remember), and I didn't get mad because it was gone. 

Progress. 

Wow, if I could handle every "little" thing like this life would be good. And this was before I had the chance to learn a new acronym: DIRM.

Does It Really Matter?

On the first of August the Alzheimer's Association presented a Caregiver's Conference in Denton. In the session on communication DIRM came up, and I thought I should get it tattooed on my wrist where I can see it all the time. (And in the grand scheme of things, it's good advice for EVERYBODY, not just caregivers, but that could be another blog topic.)

So now I'm trying to remember to ask myself a series of questions before I respond to "stuff happening."

1. Did anybody (human or animal) get hurt?
2. Was there any major property damage?
3. Was our security endangered?
4. Was a financial account compromised?

There might be some secondary questions to go with this, depending on the situation, but you get the gist. A fermenting bag of milk, flour, sugar and yeast disappearing isn't a "yes" answer to any of these questions. Move on. Because it doesn't really matter.

I messaged Deb and asked if we were still good enough friends for her to give me more starter when it was time to give some away, and she said "of course."  This bag of goo went into my sewing and crafts room, which is way too much of a "girl cave" for Bill to enter often. Ten days later two aromatic loaves of bread emerged from the oven, and another batch of starter bubbled away on the shelf next to my beading and soap making supplies. (Let me know if you want to be on the distribution list for starter--I have some to give away every 10 days or so.)

And I've found one less thing to get annoyed about.

This post originally appeared on The View From Little D blog on August 13, 2013. 

The Less He Remembers, the More I Know

On Tuesday we ventured back down to UTSW Medical School in Dallas, specifically to the Memory Clinic, for another evaluation for Bill.  A year ago when we made this trip he drove, and I was holding out hope the problems with his memory and confusion were normal pressure hydrocephalus.

After an MRI, blood tests, neuropsychological testing and a thorough evaluation by Dr. Quiceno, we walked away with nothing much more than “mild to moderate cognitive impairment” and “keep doing what you’re doing and come back in a year.”

Blog posts I’ve written since then will give you an idea of the odyssey we’re on. Thank God for my circle of friends, especially the gang at church, the Denton ACTS community and the Knights of Columbus. More recently the Alzheimer’s Association has proven to be a rock of support.

In the last year I’ve struggled with trying to clear out the detritus of two family estates and reduce the amount of crap we’ve collected over 31 years. Because my “help” is sometimes “anti-help” (thanks to my friend Tammie for describing that phenomenon) the process is slower than I’d like. I still haven’t sold that piano. I’m still trying to figure out the finances and get them under control—something I have always relied on Bill to do. And yes, I’ve wallowed in denial, hoping all the experts were wrong while simultaneously watching my husband slip away from me.

Not that there aren’t moments of great joy and success. He’s still brilliant at reviewing and editing a resume, and so far there’s a 100 percent hire rate of former students who’ve had him re-work their resume. One of them is working for the Alzheimer’s Association.

But sitting in the neuropsychologist’s office on Tuesday, I realized a few things I had suspected. He’s forgetting more than I was willing to admit. And like many dementia patients, he’s pretty good at covering up those memory lapses.

Dr. Ruchinskas, the neuropsychologist who saw us last year, asked Bill questions, and when he couldn’t answer, I filled in. At one point I asked him who was coming to the house frequently to work on cataloging the 1,000 or so classical vinyl LPs that we’ll be selling. He didn’t remember her name. I prompted him. “You know, we see them at church every Sunday. She’s the sacristan at Mass, and afterward we always talk to her husband. “

Still clueless.  So I said her name. “Oh, yes, Adina. Right” he said, as if he really knew who we were talking about.

“Do you know her husband’s name?”

Deer in the headlights stare.

“Karl. His name is Karl.”  Then he seemed to remember.

I then asked “Who came to visit over July 4^th weekend?”

No answer.

“You know, our friends from Houston. Our good friends whom we’ve known since 1988.”

No clue.

“Mary and Tim” I said.

“Oh yeah, right!” he said, but I could tell he didn’t remember back two weeks to July 4^th, and I’m not sure he remembered who Mary and Tim are.

I’m getting better at keeping my composure.  Dr. Ruchinskas and the medical school resident took Bill to the room where the neuropsychological testing would be performed, and then he returned to talk to me.

He asked me about Bill, and then asked me about my plans, my state of health, and what I’m doing to cope with this. Bill is the patient, but this guy is taking care of me right now. It was a great open, candid conversation with a professional committed to curing this disease and, in the absence of that, making sure the caregiver is taken care of.

I can’t tell you what that means to me.

Once I assured him I had all the processes in place, in process or at least in my head, he told me I was doing exactly what I needed to be doing right now. Once again, I was assured by a professional in the field of dementia that I’m doing the best I can, and that’s all I can do.

I have my support group with the Alzheimer’s Association, my therapist (how I found her should be another blog post), my friends at church, an Alzheimer’s Association case manager who calls every now and then just to check in, and a list of things I need to do in my spare time between 2 and 4 in the morning.  And I’m convinced I have the most caring medical team on the planet at UTSW. Dr. Ruchinskas talked to me for 45 minutes, most of which was about me taking care of me.

These people get it. They are doing this because they care about the patients, their families, and they want to see this disease cured.  I didn’t feel like we were just another medical chart. Yes, it’s hard to get an appointment there and you may have to wait months to get in, but the knowledge that we’re working with people doing cutting-edge research into a disease that is the 6^th largest cause of death in the U.S. is comforting.

If they can’t cure my husband of 31 years, if they can’t prevent my generation from getting dementia, I know what they’re learning now will help someone in the future.

I was inspired to enroll in the Dallas Lifespan Brain Study, which seems to be a joint venture between UTD Center for Vital Longevity and UTSW. I’ve completed all the same neuropsychological tests Bill had, and will undergo an MRI and an Amyloid PET Scan. Four years from now we’ll do all that again, and compare the results. I won’t know what any of the test results are, but this study of seemingly healthy “older” adults promises to contribute to research that may eradicate this disease for future generations. 

After what I, and caregivers like me, go through, I figure it’s the least I can do.

This post originally appeared on The View From Little D blog, July 18, 2013.