One Day, A Cure

Posted on February 18, 2016 by Deborah Newell

I have lost family members to Alzheimer’s. I have several friends who have lost family members to Alzheimer’s. We are losing a friend of 35+ years to Alzheimer’s, and he is in our age group.

Recently I wrote a three part blog about our friend, called “Remembering Chuck”, detailing some of the challenges he and his family have been going through. The other day his oldest daughter Katy shared my blog post on her Facebook, with the following message:

“I’m not usually one for sharing super personal things online, but this is a struggle I know many have gone through and may yet have to.

I saw my dad this past Christmas for the first time in several years. Living so far away, I had heard from my sisters and mom how quickly his Alzheimer’s had progressed, and I thought because I understood it logically that I would be able to handle seeing him in person. That was…not the case. I had to turn away to hide my tears because it was just so clear how far gone he is. It was painful to hear him ask me if I was dating anyone (when he was at my wedding several years ago) and to describe living with his parents, who have been dead now for 51 years. And then to turn around and call me Katybug, as he always did when I was a kid. Some things are there and some aren’t.

I’ll be honest – going through this with my dad has been a drawn-out mourning process. I catch myself referring to him in past tense as if he were already gone, and honestly…in a lot of ways, he is. The difference is that he’s technically still around, and my grief over his loss has been extended over a decade rather than hitting all at once if he had died. Part of me feels like when he finally passes away, it will be easier because I’ve had time to process it (and because I know the happiness that awaits him on the other side). But if my experience this Christmas is any indication, it may not be after all.

Alzheimer’s sucks, especially of the early-onset variety, and I live in fear that it’s my future, too. I can only hope that I have more time to prepare than he did.”

Sobering thoughts from a young lady in her mid-twenties. She has two younger sisters, who are probably feeling and thinking the same things.

I was twenty-five years older than Katy when my uncles and my aunt started experiencing the effects of this disease. It was terrible to watch. Seeing a loved one you’ve known all your life as vibrant, active, full of life, turn into someone who sometimes doesn’t know who you are or anything about you is heart-wrenching.

I watched my mother’s oldest sister as she went through the stages of this disease, and although, like Katy, I wasn’t there all the time to see her descent into the valley of Alzheimer’s, along with hearing almost daily reports from my mother, I also saw Aunt Mary every couple of months, and the change I saw in her each time was terribly upsetting. She progressed to where she didn’t know where she was or what she was doing, or even who she was.

Many of you thankfully haven’t yet been touched by this disease. Oh, you may think you have because you’ve heard of a favorite celebrity who’s affected by it and think, “Oh, how horrible this is. They’re so great, so talented, what a shame. I feel so bad for them.” And then you forget about them.

You have no idea. Until it’s personal. Then it hits you. Then you understand.

What about my uncle who rose from being a minimum wage office boy to the comptroller of an international corporation? He developed Alzheimer’s and died not knowing who any of us were, or who he was, not knowing how to even eat or button a button.

What about my friend’s mother who not only raised five beautiful children, but had been a popular teacher, a successful realtor, and a deacon in her church for years? Who at the end of her life couldn’t speak, or focus her eyes on anything, or even pray to the Lord she had served most of her life.

What about another friend’s mother whose savings were depleted because of her illness and had to be placed in a state-sponsored facility because her children couldn’t afford anywhere else? Her mind would still function briefly but in her times of lucidity would cry out for her own parents who’d been dead for fifty years or more, because she thought she was a teenager and still living with them.

There are as many different stories of Alzheimer’s patients as there are people who suffer with it. Yes, it greatly affects the person who has it, but we cannot forget that person’s loved ones who are living it day to day in a different way. The patient doesn’t know he or she isn’t remembering things; to them, everything is just the way it should be in their own private world.

But for those of us whose loved ones are going through this, it’s a nightmarish reality that never ends. We try to rationalize their behavior and deny anything is wrong until we are finally forced to admit what’s happening. We cannot bring back our loved one’s memory; we cannot rationalize the “new normal” our loved one has become. They may still look like that person, but there’s a vacancy in their eyes and a look on their face that tells us everything is forever changed. We desperately want them back, but it can’t happen.

And yes, we mourn. As Katy, said we mourn while they are still alive because the person we knew them as is no longer there. We mourn our own loss of the last few years with them. We mourn because there are grandchildren missing out on knowing their grandparents. And we mourn because our loved ones are missing out on even more. Fortunately they don’t realize it.

But we do. And, like Katy, I cannot help but wonder if I will be on that road as well. And if that time comes, I may not even know I’m on that road, but my daughter and grandchildren would, and I cannot bear that thought.

One day, please, let there be a cure, as well as a prevention, for this awful disease. Before it grabs any more of us.

Remembering Chuck, Part Three

Posted on February 5, 2016 by Deborah Newell

“The only upside of Alzheimer’s I’ve found so far: introducing my dad to “new” things. This evening I took him to Starbucks, and he was like a kid on Christmas. It was endearing and heartbreaking at the same time.” Elizabeth, Chuck’s middle daughter, November, 2015.

If you haven’t read Parts 1 and 2 of this story, please do so before reading this last installment, so you will better understand the struggles our friend and his family are going through.

Although Chuck now has no concept of time or holidays, his daughters were all able to get together with him at Christmas, just a few months ago. It took him a little while to remember his oldest daughter Katy’s husband Chase, but eventually he did. He kept looking at him, and then looking away, like something was trying to register. Then suddenly Chuck walked up to him and said, “Chase! How are you? How is school?” That moment of recognition brought Katy to tears, and everyone else as well.

At one point that day Patty (his ex-wife) asked him if he remembered her. He said, “yes,” but couldn’t remember her name. He did later on, and gave her a ‘bigger-than-he-should-have’ hug, which made the girls very uncomfortable. Patty quickly hugged him back and then pulled away, and the girls stepped in. Chuck can’t help it. Alzheimer’s patients live in the past; it’s their clearest memories. Patty has gone from being his wife, to his ex-wife, his sister, his daughter, and now back to his wife. Every day is different. There have already been days when he doesn’t know who one of the girls is. That is the hardest of all. Because one day he will stop remembering them, and the memories won’t return.

Unfortunately the last nursing home he was placed in didn’t work out. The facility was not what they had thought it would be, and although he wasn’t able to escape, no one was happy with his being there. So the search began again. Just four days ago we found out a new place has been secured for him, and he has already been relocated there. This facility looks like an ideal home for someone with Chuck’s symptoms. There is a library, a computer center, and a full recreational schedule of games and puzzles, trivia contests, music, and movies. He will be able to interact more with people, and will be encouraged to participate in activities with other residents. I pray this will be the place he will finally be able to call home.

Just a few hours after finding out this news, my husband and I were surprised with a FaceTime call from Patty. We were thrilled to see/talk to her, but what we weren’t expecting was to actually be able to see and talk with Chuck, who we hadn’t actually seen except in photos in probably twenty-five years! To say we were happy as well as excited is one of the biggest understatements I could write!

While I will not elaborate on the details of our conversation, what I will say is that we were delighted to see and talk with him! He remembered both Ben and me, and he remembered our daughter, his goddaughter Ashley. He remembered where he and Ben met, and who they were both working for at the time. He remembered when he proposed to Patty, although none of us can remember the name of the restaurant. But he thought he had talked to his parents just a few days ago, and they’ve been dead for longer than we’ve known him. He talked about things we’d all done together, and when he told us he was having fried chicken for dinner, and I reminded him how much he’d enjoyed my mother’s fried chicken, he remembered that as well.

We have no way of knowing how Chuck is processing his thoughts anymore. Some of our conversation was like it used to be twenty-five years ago, and some of it made sense only to him. But the important part is, we were able to re-establish a relationship with him, and as often as we can, we hope to continue that relationship. Good friends are too important to lose, and even if the memories may not all be totally clear anymore, one day when we are all together with the Lord, they will be. Until that day hopefully many decades in the future, we will continue to enjoy as many conversations with him as possible, and if they don’t exactly make sense to us, as long as they do to him, we will continue to have them. That’s what reunited friends do.

As Patty has said many times, “This breaks my heart. Every day I wish my girls could know the Chuck that I married. Fortunately they have their own special memories of their daddy, and they all love him dearly. That’s all I can hope for.”

We still have our own memories of Chuck before this happened. That same man is definitely still there, although locked inside a mind whose memories no longer work exactly the way they used to. We have pictures to go along with some of those memories, and so do his children. They call him, and visit when they can, and show him pictures to remind him of family. They bring his grandson to visit, and the two of them play cars and trucks on the floor together, just two children having fun. Like the trip to Starbucks his daughter talked about, every day is a new adventure, because he usually doesn’t remember from day to day, or week to week. The things he used to enjoy he sometimes doesn’t remember ever doing. Each day there are just a few less memories.

But we remember Chuck.

Even if Chuck doesn’t always remember himself anymore.

Note: If you have a loved one suffering from this disease, please seek out a support group. Read all that you can about it. Ask questions. And above all, continue to love that person. Respect them. Don’t belittle them when they don’t make sense with what they say. They cannot help it. Their world is not quite the same as it was any more.

Remembering Chuck, Part Two

Posted on February 3, 2016 by Deborah Newell

If you haven’t read Part One of this story, please do so before reading this one, so you will better understand the struggles our friend and his family are going through.

Far too often, people have a tendency to think of Alzheimer’s victims as only the elderly, who are expected to go through changes such as this toward the end of their lives. This is simply not true. One of our friend’s fathers is ninety-four, and his memory is as clear as it was fifty years ago. Chuck’s memory issues began most likely in his mid-fifties.

After we started catching up with Chuck and his ex-wife and daughters, it became very clear Chuck was rapidly going downhill with this disease. Shortly after re-connecting, his two oldest daughters got married, and the next year, Chuck became a grandfather. The pictures we saw of Chuck and the wedding party revealed a man who looked like our friend, but yet, there was just something about the look on his face that told us he wasn’t the same man we remembered; something was missing.

This man was not quite the same Chuck we remembered. Alzheimer’s does that. It will take the mind of its victim, gradually squeeze the best parts out, and leave behind someone who still looks mostly like that person, but yet, the eyes that are looking out of their mind are clearly not accurately registering what they’re seeing.

The worst part was how much his children are missing, because the father they dearly love isn’t the same any more. He isn’t able to give them the fatherly advice young women still need from their dads. He wasn’t able to bond with his new sons-in-law and properly welcome them into the family. Although now he still remembers his grandson when he sees him, he will never be able to take him fishing, teach him to ride a bike, go to the park, or spend a Saturday afternoon playing baseball with him, and that little boy will miss out on doing all of the fun things a young boy should do with his grandfather. That young man will never have the pleasure of knowing how special “Grandpa Chuck” really is. He’ll never hear stories about his grandfather’s childhood, because even though many of his memories are based in the past, they are still jumbled and confused, and make sense only in his own memories.

Patty told us details about the progression of his illness, but not without some personal pain of her own. “I do not have bad feelings about the years I was married to Chuck. My only regret is that we couldn’t make it last. I always wanted to be that person who married and stayed that way forever. Had I known then that his problems stemmed from an illness, I would not have deserted him. Sometimes I wonder, if I had stayed, had we worked through things, would the onset of this disease have progressed at a much slower rate? I’ll never know. But it is so unbelievably sad all the same.”

Patty, you did not desert him. You are caring for him now as no one else can. And we all cannot thank you enough for that. I also personally cannot thank you and the girls enough to allow me to share his story, in hopes that other families will read it and understand they’re not alone; that the things their loved ones are doing because of this disease are not that unusal.

Chuck always loved to travel. Even when he was living on only his social security and barely making ends meet, he would get his check, pay a few utility bills, jump in his car and drive somewhere.

Deeper into the Alzheimer’s journey he would take off and drive from Texas to Indiana or Utah, supposedly for job interviews, but there were none. Part of him must have known his money was limited, because during or after a trip, he wouldn’t eat or get a hotel room, even if he drove for three days. He would stop in rest areas to sleep, and fill up on soda and chips along the way. By the third day, he would be in such bad shape mentally that he couldn’t find his way home. Once, Patty had to drive from Texas to Arkansas to get him. He had been found by police, incoherent, at a stop sign in the middle of a national forest. He had no idea where he was; his car was out of gas, and his wallet was empty.

Because of his taking so many of these trips, he would come home with almost no money. When the landlord showed up looking for his rent, Chuck would pay whatever token amount he had left. This amazingly went on for fifteen months before the landlord finally evicted him. Patty went to court with him, because, sadly, Chuck didn’t even understand he was being evicted.

Patty bought a small mobile home for him (so no one could raise his rent) two blocks from their own house, and she and her husband moved him into that. Patty was designated his legal representative to make sure his bills were paid, and would take him shopping for food every few weeks.

A short while later she started getting calls that Chuck was stealing from the local grocery store. He’d stopped eating the food at his house, and only wanted ice cream and donuts. Patty would buy ice cream when they went shopping, but when he ran out, he would steal more, leaving the healthy food untouched. If she gave him any extra money he would spend it for more ice cream and donuts, and when that was gone, he’d go back to stealing. Remember, Alzheimer’s patients do not have any concept of what they are doing; this is not unusual behavior. The Chuck we had known would never, ever, do anything like this.

Three years after moving into the mobile home, Patty knew Chuck could not be left alone anymore.

They found an assisted living facility for him, but three days later, Chuck had become so delusional the facility called and told Patty she had to remove him immediately. He spent three weeks in a psychiatric hospital until a nursing home was found for him. That home was a locked facility, but within a few days, they made him leave as well. Somehow he kept escaping, and one time Patty found him walking up the highway towards where he used to live. He was returned to the psychiatric hospital for another two weeks until they found another secured nursing home in Ft. Worth, from which they were assured he could not escape.

To even have to look at nursing homes, memory care centers, or similar residential care centers as somewhere from which a loved one cannot escape is sadly part of the reality of this disease. I remember all too well one of my uncles being in the dementia/Alzheimer’s section of the local nursing home and having to wear an ankle bracelet so that if he tried to leave an alarm would go off, and he could be stopped. At the time I didn’t understand why such measures were necessary, and thought it was so wrong.

Now I understand.

Friday, a special conclusion, “Remembering Chuck, Part Three”.

Remembering Chuck, Part One

Posted on February 1, 2016 by Deborah Newell

We’ve known Chuck for probably 35 years. He’s only five years older than we are, turning seventy this year. And these days that isn’t really old.

He and Ben met, of all places, at a Roy Rogers Restaurant marketing meeting where Ben was presenting a marketing concept. They became fast friends, and the three of us had a lot of fun times together. Many of those times Chuck’s dog, a huge Great Dane named Verushka, accompanied us. We included Chuck in most of our holiday dinners since he didn’t have any local family, and he loved our Eastern Shore home cooking, sometimes having two or three helpings when everyone else was already full, and never having a weight problem!

Chuck was best man at our wedding, while Verushka patiently waited outside for a slice of wedding cake (although this picture makes her look a LOT smaller than she was). When our daughter was born, Chuck was her godfather.

A few years after Ben and I were married, Chuck met Patty, who was working at the same company he was, and ended up proposing to her one night when we were all out to dinner by dropping her engagement ring in a wine glass. She was so busy playing with baby Ashley, it took her almost an hour to notice it, and we still joke about it today! We were afraid she’d either swallow it, or the waiter would take her glass away before she found it (fortunately she did find it, and didn’t swallow it!). They were married a few months later.

When Chuck received a job offer out of the area six months later, we sadly said goodbye to our friends, and wished them the best with their new life in Las Vegas. Since he was working for the same company as Ben at the time, we were sure we’d still get to see them at company meetings.

But that didn’t happen. Chuck changed jobs a few times, and the years flew by, and unfortunately, since they’d moved several times because of those job changes, we lost track of each other. A number of years later we finally heard from Chuck, and were terribly upset to learn that after numerous moves to numerous states, and three beautiful daughters, their marriage had ended. Although we tried to keep up with him after that, when we’d try to contact him, the last numbers he’d given us were disconnected. And the last places he’d worked, well, he wasn’t there anymore. And we had no way to contact the few family members he had left.

Fortunately, there was Facebook, and one day I found him on there. Ben and I were thrilled to be able to catch up. But he wasn’t on there a lot, and the times we’d try to talk to him in private messages, we’d get short answers, some of which didn’t make a lot of sense.

Then Patty connected with us. I was so happy! We’d missed her, and were so glad to re-connect with her, as well as their three daughters we’d never met. We exchanged so many private messages back and forth, I thought we were going to wear out our keyboards.

That’s when we found out about Chuck.

There’s a song that says “Friends are friends forever…” Some friendships are like that. You may be separated by years and circumstances, but good friends remain good friends, and when we reconnect, it’s like the years melt away. My husband and I are fortunate to have several special friends like that.

In Chuck’s case, though, more than the years had melted away.

Chuck was in the beginning stages of Alzheimer’s, which had probably started presenting itself in little ways even before he turned 60, which would have explained his inability to hold a job over the past years, as well as our losing touch with him so many times.

At that time, Patty told us Chuck remembered Ben and me, and evidently still talked about us a lot. He remembered his daughters. He remembered Patty, and he knew they were divorced. But he didn’t always remember what day it was. He’d lost his driver’s license several years before, because he had become too distracted to drive. He would wander, and people would have to call Patty to come get him, because he couldn’t remember how to get home. He hadn’t been able to work for years, and required someone to come in where he was living to clean and fix a few meals. Patty sadly had to find a new home for his dog, because he would forget to take care of him.

Ben and I couldn’t believe what we heard. The full-of-life, fun-loving, and wonderful friend we’d tried so hard to find, the friend we’d missed so much….someone our own age…had Alzheimer’s.

Because he had no one else to look out for him, Patty had stepped in and was doing everything she could to see that he was taken care of. Even though she has remarried, she still cares for Chuck, and wants to be sure he is watched after, for his sake as well as for their daughters. Thank goodness for Patty!

It was a sobering realization for us. It’s much harder for his three daughters, the oldest of whom is just a few years younger than our daughter.

Alzheimer’s goes in a vicious cycle. It’s exhausting for those in the cycle. And heartbreaking as well, because there is no cure. It can begin at any age. It can progress slowly, or it can begin to progress rapidly to the point that the patient forgets who his family is, and who he is. No one knows how it will affect their loved one, or how quickly; only that it does.

There’s more to the story. Far too often, people have a tendency to think of Alzheimer’s victims as the elderly, who are expected to go through changes such as this toward the end of their lives. Which is simply not true. Chuck probably started experiencing symptoms before he turned sixty. Early-onset Alzheimer’s affects up to 5% of its 5,000,000 victims, and can occur in patients as young as in their 40’s or 50’s.* Since patients are sometimes not accurately diagnosed in the beginning stages, it’s really difficult to tell.

What I can tell you, is that this disease affects not only the patient, but everyone who loves them. No one in their circle of family and friends remains untouched. And all of their lives are forever changed.

Until we had these discussions with Patty about Chuck, we had no idea how very devastating this can really be. Wednesday, his story continues, with “Remembering Chuck, Part Two”.

* http://www.alz.org/alzheimers_disease_early_onset.asp

Jumbled Dreams

Posted on January 18, 2016 by Deborah Newell

During one of those restless nights, which I’ve unfortunately had a lot of recently, I woke from a very weird dream. We’ve all had those from time to time. But this one was so strange I had to immediately write it all down, because I knew it had a meaning, and I knew after I’d written it down the meaning would become clear.

In my dream I had put a pan of cinnamon buns in to bake. Nothing unusual about that, but instead of an oven, I used a wooden chest of drawers my father had made for me one Christmas. I recognized it immediately in my dream, with its white and blue paint and “Mary Had a Little Lamb” decals on the sides. I guess it sort of could have looked like an oven, if I were still a kid playing make believe. But I was an adult, even in the dream.

I even set an imaginary dial for the temperature and a timer to set the cooking time. And even stranger, the chest/oven was in the middle of a bedroom! A very messy bedroom. There were clothes all over the floor that I’d never seen. Who they belonged to, I have no idea, nor did I know why any of this was where it was. At the time it seemed normal.

Suddenly I went downstairs (from somewhere upstairs in whatever house I was in) and started telling a bunch of people I don’t think I even knew, about the special treat I’d prepared for a meeting we were all getting ready to attend. Then I realized I wasn’t ready for the meeting, so I started looking for my briefcase which had my meeting notes and laptop, and it was gone! I searched everywhere for it. I even told some of the people I had to find it because all of my memories were on there, and I hadn’t backed them up yet. (“Memories” was the word I used…keep reading)

Still looking for my laptop, I went outside to look in my friend’s car (why I didn’t have my own car I have no idea, and I’m not sure I even knew this “friend”) and her car was gone. I ran inside and asked her about it, and she said she had no idea what had happened to it. She didn’t act concerned at all, and said my stuff wasn’t in there anyway. I was beside myself by that point, so I ran upstairs to check my oven, and that was gone, too. The only thing left was an indentation in the carpet where it had been.

By that time I was frantic. I kept saying over and over again, “I’ve lost my mind. What’s going on?” I ran back downstairs and tried to turn on the lights, and none of the light switches would work…I was in a panic, and didn’t know what to do. I was running in circles….

And then….I woke up, almost shaking. I had the strangest feeling, and I knew this dream meant something, but I didn’t know what.
As I wrote all of it down, the Lord spoke to me and said, “This is what it’s like as dementia and Alzheimer’s start to set in.”

We’ve all had strange dreams from time to time. But this particular one struck me, especially because of the familiarity of some of the components. Now I knew why.

It also made me start thinking about what our family members may go though as memory loss sets in from the aging process.

Daily everyday tasks or just day-to-day living can become jumbled and difficult. Routine activities such as cooking can become complex, and sometimes even dangerous. One of my aunts slowly ventured into the world of dementia after her husband passed away. At the beginning of her adventures in this strange new world, her actions, although a bit bizarre at times, were harmless, and the caregivers hired to stay with her during the day were able to easily prevent her from situations in which she could harm herself.

Unfortunately this strange new world became the norm for my aunt, rather than the exception and some of her new activities combined previously normal activities with some rather interesting twists. Her caregivers had to remove the burner knobs on her stove before they left in the evening, because several times they had come to the house in the morning and found her “cooking” her good jewelry in a saucepan on the stove, stirring her rings and brooches with a wooden spoon, just like she used to do when making sauces. A few times they even found food that had been prepared and placed in a drawer to bake, similar to the dream I described above.

I wonder, was what I was experiencing in my dream what my aunt was experiencing in her mind? How awful that must have been for her. Or worse, did she even know at that point what reality was?

We all forget where we park our cars at times; even our 27 year old daughter does that! And we know that brief scary feeling when we think our car’s been stolen, until we find it in the next row of parked vehicles. Dreams of being unprepared for meetings or tests in school (even if we’ve been out for years) are also commonplace for many of us, especially under stressful conditions.

But the reality of losing control of our memory is totally different, because we cannot control it. And as frightening as it is to watch our loved ones going through this, think how frightening it is for them, as they begin to realize what’s going on, while they still can. We can escape our dreams of being out of control; they cannot. They’re forced to repeat different variations of the same dreams until they cannot reason reality from the captivity of dementia.

What can we do in this situation when a loved one is beginning this journey? Aside from making sure they are protected and cared for, all we can do is continue to love them, be patient with them (which is sometimes tough), and go along with some of the things they say, because they don’t know what they’re saying, and correcting them won’t help. It’s never something we’re prepared for, but unfortunately for many of us it’s something we have to go through. And eventually we’re forced to make decisions about their care that we’d never ever imagined we’d have to do.

Think about this the next time you have one of those crazy, mixed up dreams. I know I will. Because I’ve been through it with my aunt and my mother, and over the next several months, I will take you through some of the storms we went through, as detailed in my upcoming book, “Memories in a Daughter’s Heart”.

But be encouraged. There are better days ahead for all of us.

Just Living Life

A journal of advice, stories, and ideas from years of living

Tag Archives: alzheimer’s

One Day, A Cure

Remembering Chuck, Part Three

Remembering Chuck, Part Two

Remembering Chuck, Part One

Jumbled Dreams