Caregiver Emotion #6 – Defensiveness

Caregiver Emotion #6 – Defensiveness

After the Alzheimer’s diagnosis, you probably delved deep to find all the information you could to be the best caregiver possible. You searched reliable sources on the Internet, contacted the Alzheimer’s Association for educational opportunities, and attended support group to learn about first-hand experiences. After all your work and dedication to caregiving, cousin Sally breezes in for a ten minute visit and proceeds to list things that you are doing wrong and critiquing your job as a primary caregiver. Is it any wonder you become defensive?

Now, before you push Sally out the door and refuse to take any additional calls from her, pause to consider if anything she said had merit. She may not have presented her “help” in the right tone of voice or in a tactful way, but perhaps if you sift through her suggestions, you might find one useful nugget. Since you are the one with experience, and the one who knows your loved one best, you are responsible for using best practices while caring for your loved one, even if your least favorite cousin Sally suggested it.

When you are a caregiver for a person with Alzheimer’s, you learn how your loved one reacts to environmental changes. It may not take much to throw everything out of kilter. A gathering of friends and family may once have been something you looked forward to, but now you know it will only confuse the person you are caring for. Rather than just being defensive if someone criticizes your change in entertainment patterns, take a few minutes to explain that circumstances have changed. You don’t want to isolate your loved one, but it will be helpful for friends and family to visit in small groups rather than hosting big events.

One place you do need to be defensive is if anyone tries to take advantage of your loved one. During the early stages, Jim was the telemarketer’s best friend. It seemed that he always agreed to anything they suggested. It wasn’t unusual to come home after work and have Jim say. “Someone called about that thing.”

“What thing?”

“You know, that we want.”

“Who called?”

“I have no idea.”

After a few of those conversations, I installed caller ID. I often had to call to cancel TV programs, donations to various charities, tickets to events we couldn’t attend, and occasionally say no to people we knew who really should have known not to make agreements with Jim.

Primary caregivers have to be defensive when it comes to protecting the person with dementia, but not let defensiveness keep them from accepting help or valuable information. As with every aspect of caring for a person with Alzheimer’s, you need to control emotions, like defensiveness, in order to make the best caregiving decisions.

Copyright (c) July 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Tommy Capps, Vietnam Veteran, American Hero

Tommy Capps, Finalist for 2013 American Hero of the Year

Independence Day is a time for Americans to take stock of their freedom and think about the human sacrifice that has given it to us. As far as unpopular wars, the Vietnam War has to be at the top of the list. We were a country divided, and the very people who risked their lives to fight for our country were not given a heroes’ welcome when they returned home.

For the first time, war was brought into American homes on the news each day. Even the blood and gore we saw on TV didn’t do justice to the reality of being in a jungle with no way to tell friend from foe.

The Wall in Washington D.C. lists the names of 58,272 people who lost their lives in Vietnam. Others came home injured in body, and countless others came home with shattered spirit. Vietnam veterans became a stereotype, and Jim would often turn a TV show off in disgust saying, “Another crazed Vietnam veteran is the killer.” Hollywood’s idea of a Vietnam veteran was of a trained killer, not a young man who was drafted into jungle warfare against an invisible enemy.

When my eighteen-year-old brother Tommy was drafted and sent to Vietnam, we were all scared for what he would be facing, but my mother was terrified. Three months after his tour of duty began, I woke up one night to hear voices and my mother crying and I knew it had to be about Tommy. I kept thinking, he can’t be dead or I would feel it. I finally realized he had been wounded and was in the states.

Recently, my sister-in-law nominated Tommy for the American Hero of the Year award. This time, the phone call was good news when my brother found out he was a finalist for Hero of the Year when he didn’t even know he had been nominated.

Tommy has shown courage his entire life. After Vietnam he returned to high school and graduated the same year I did. He was a positive influence on the high school kids and I’m sure a lot of would-be dropouts continued their education. He worked in law enforcement as a deputy, chief of police, and detective. Eventually, he worked for the state of Missouri investigating child abuse cases. He was instrumental in sending 230 child abusers and pedophiles to prison. In a five-hundred word essay, Teresa only touched on a few of the highlights. Tommy’s family and friends could tell hundreds of stories about how he’s made his corner of the world better. How he’s been the one you could count on to always do the right thing—maybe not exactly what you asked for, but what you needed.

Tommy has been my hero for years, now America has a chance to make him their hero too. Go to the website http://militaryhero.com/vote and sign up for an account. Once you’ve signed up, sign in and vote once each day between now and August 6. Tommy is already a winner in the contest as well as life.

Copyright (c) July 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Cousins Reunion

Capps Cousins

My mom and dad both came from big families and I have a hundred or so cousins. Growing up, I knew my Whittle cousins quite well. We saw each other frequently at Grandma and Grandpa Whittle’s house in Stover. The ones close to my age became like additional sisters to me. I even got to know some of the younger kids who seemed like pests at the time, but I still formed that family bond with them.

I never had the same close attachment with my cousins on my dad’s side of the family. My only contact with them was during sporadic family reunions, usually at my Aunt Freida’s house. Because of the reunion location, the cousin I saw most consistently on the Capps side of the family was Karen. I was in my early teens when I met my cousins Charlie and Sharyn, but we became pen pals and they both came to my high school graduation.

Time passed and it seemed that I only saw my cousins at funerals, usually with little time to visit and become reacquainted. When Charlie died, my mom and I went to the funeral. Sharyn was heartbroken to lose her only sibling. We exchanged addresses but our written communication was limited to Christmas cards. Jim was in the nursing home in Marshall where Sharyn lived and we occasionally had lunch together. A few years ago, my Christmas card was returned, and I never received one from her with a new address.

It is easy to lose touch with people and yet with Facebook it is so easy to connect. Last winter, my cousin Karen suggested that I friend my cousin Marge. Soon, we were talking about a cousins reunion in the summer.

As the time grew closer, we firmed up a date. My brother Tommy offered to host the reunion. He asked me to get hold of my aunt and uncle that lived in Sedalia and their daughter. I told him I could do that.

“How about Sharyn?” I asked.

“Can you call her?”

“I’m sure I can track her down,” I said. “I know her married name, and I think she lives at Marshall.”

After we hung up, I placed the call to my aunt and uncle. They were excited about a reunion. Then I tried to find Sharyn on Google. I couldn’t find her, so I pulled out an area wide phone book and there she was—listed at Sweet Springs. I’d been spelling her last name wrong. Oh, well, since all I was looking for was a phone number, I called the number in the book. Busy. After several attempts, She’s probably on dial up Internet, I thought. The next day, I called and a recording said the number had been disconnected.

My phone book was several years old, so I asked a co-worker, Dawn, if she had a newer directory. She said, “I always look on People Find.”

“Oh, I couldn’t find her on Google, but I was spelling Sharyn’s name wrong.” I spelled the name and she turned to me and said, “It says she’s deceased.”

“What? No one in the family knew that. Maybe it’s not her.”

Dawn plugged the name in Google and up popped Sharyn’s obituary. She had died two years ago.

After I shared the shocking news, I realized how important this reunion was. I knew Marge had lost three brothers that I never really had a chance to know.

The day of the reunion was a beautiful sunny, warm summer day. As we sat in Tommy’s lanai, we took turns talking about what we did, our families, our passions.

“When I was growing up, I thought Dad had about fifteen brothers and sisters,” my sister Terri said. My two aunts at the reunion—Rosemary (Runt) and Freida (Dede) both laughed.

“Dad is the one that gave us the nicknames,” Rosemary said.

“I thought Robert did,” said my cousin Robin. I nodded agreement. Her mother, Shirley (Tot) had always said my dad had given them the nicknames. Aunt Shirley passed away two years ago, and I remembered her saying the same thing many times.

We heard stories of heartbreak, my brother Jimmy and my cousin Mary had both lost daughters. My cousin Karen shared the humorous story of my mom and Aunt Freida’s trip to California to visit her sister “Dude.” My aunt Freida stepped off the train to make sure they were on the correct train, and the train left with my mom, my mentally handicapped cousin Laney, my aunt’s ticket, purse, and luggage. Even without money or proof of identity, my aunt managed to get on the next train and arrived shortly after my mom and Laney. “That’s why we take her now,” Karen finished.

“Laney is my favorite cousin,” my brother Jimmy said. “She’s my biggest fan.” Laney beamed from ear-to-ear. My aunt takes her to the nursing home when Jimmy, my mom, and friends play music.

After sharing abbreviated stories of our lives, we moved to the yard for pictures and conversation. My mom, Jimmy, and Mitchell played music with others joining in to sing. Family ties brought us together, but it was the beating heart of family helped us bond.

Copyright (c) June 2013 by L.S. Fisher

Http://earlyonset.blogspot.com

Caregiver Emotion #5 Loneliness

Before I even knew Sarah Harris, her words in the national Alzheimer’s newsletter resonated with me. When she spoke at the candlelight vigil many years ago, she said, “Alzheimer’s is a lonely disease.”

Dementia disrupts personal relationships in a way that few other diseases do. As a caregiver, you will miss the give and take of your relationship with your loved one. Jim developed aphasia early on in the disease. He changed from a man who laughed and joked and shared his deepest thoughts with me to one who seldom spoke a word. He once could play any instruments with strings, but gradually he struggled to play his guitar. Jim had known the lyrics to several hundred songs, but eventually, he would only attempt a few songs and often sang only the chorus over and over. I missed meaningful communication with my husband. Our relationship gradually evolved and each transition increased the loneliness.

Another factor of loneliness is that some friends back away, especially when those friendships involve another couple. Activities are no longer the equal friendships from before and your loved one cannot participate at the same level. Other friends may simply not know what to say or how to react to odd behavior. You will learn to rely on the ones who take the changes in stride and continue to support you in your changing roles. Eating out can be a real challenge. Once, we went out to eat at a nice restaurant with our friends Rick and Robby. We all know how cold restaurants can be, and with Jim on blood thinners, he began to shiver uncontrollably. Robby went to their car and got a blanket that she wrapped around Jim. After our meal came, we discovered that the fish Jim ordered had bones in it. Noticing that it looked like Jim didn’t remember how to remove the bones, his old fishing buddy, Rick, took a steak knife and filleted the fish leaving him only the boneless portion to eat.

Spending time with trusted friends or family who make your loved one feel part of the group is a good way to combat loneliness. These special people can lend some normalcy to a world that at many times seems anything but normal.

We often socialize with friends based on an activity that we have in common. Whether you play golf, play cards, ride motorcycles, or have backyard barbecues, a loss of skill may make continuing as a couple impossible, or dangerous. Your loved one may also become uneasy in crowds or a different environment causing him distress and anxiety for you. People who are more casual acquaintances, may not realize the activity is no longer appropriate for your loved one. It may be simpler to turn down invitations, increasing the gap between you and your friends.

To keep from being left out of all the fun, you can plan a get-together with a small group where your loved one is more comfortable. Or, you may want to find someone to stay with your loved one so that you can enjoy an outing. You don’t want to isolate yourself from people who can support you and offer you companionship.

Widen your circle of friends by joining a club, volunteering, or attending charity events. Being a part of these groups will not only help you find new friends, but it can also keep you busy while making a worthwhile contribution to your community.

I found the best way to battle loneliness was to be comfortable with being alone. After the tough decision to place Jim in a nursing home, I returned to school to earn my bachelor’s degree. Working full time and studying for my classes didn’t leave much time to feel sorry for myself or to feel lonely. One of the better decisions I made was to join a local business women’s group. Our town is small, but our local is the largest Business Women of Missouri club. I’ve made friends with women throughout Missouri that I would never have known otherwise. I also joined two writers’ guilds. I gained a new group of friends where I found encouragement, support, and learned invaluable information to build on my desire to write. Whatever your interests, you can combat loneliness by taking a chance on joining with like-minded people.

Yes, Alzheimer’s is a lonely disease, but keeping active is your best defense. Don’t be afraid to leave your comfort zone, especially when you are feeling sad and alone. After all, loneliness is an emotional response to isolation, so surround yourself with friends and family who uplift you and fill your need for interaction with others through the giving and receiving of friendship.

Copyright June 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Caregiver Emotion #4 – Worry

Jim used to say I was a worrywart, and I can’t deny that it was (and still is) true. At one time I remember telling him, “I have to worry, because you don’t.”

When we were first married, I worried about money because we never seemed to have too much of it. Paying bills on time and not racking up debt was important to me. I also felt a need for the safety net of putting a little aside for unexpected expenses. Although I was always conscious of our financial situation, one time I made an error in my checkbook. The bank didn’t return the check, but notified me that I needed more money in my account. We had money in another account, but I was worried because I received the notice on a weekend and the bank was closed.

It so happened that Jim was in the hospital in the stress unit and his mom and dad didn’t want me to tell him about the problem with the bank. The minute Jim saw my face, he demanded to know what was wrong. When I told him, he said, “Honey, when a problem can be solved by throwing a little money at it, it just isn’t worth worrying about.” Those were wise words, indeed.

Unfortunately, many of the worries you have as a caregiver cannot be solved with money. Being a caregiver to a person who has dementia is demanding and requires a lot of patience. You might worry that you don’t have the qualities you need to take care of your loved one. Sometimes a bigger worry is that if your loved one is being cared for by someone else, substitute caregivers may not meet all of his needs. You worry that your loved one feels abandoned or is lonely and afraid.

You can even worry about worrying! It can become an endless cycle of worry that can put gray hair on your head, or worse, bring on other health problems.

What can you do to break the cycle? I’ve found a few good diversions that help me keep worry under control. First, stay active and busy. This will give you something else to think about other than the problem that is worrying you.

Second, look for solutions. Instead of just worrying for the sake of worrying, calm down and think about ways to lessen your anxiety. I worried about Jim falling when he was in the nursing home. He was trying to get up in the mornings before the aides came to help him out of bed, and they were finding him on the floor. Jim had always been an early riser, so I suggested they wake him up about five in the morning and help him out of bed. Problem solved.

Third, share your worries with friends, family members, a support group, or a therapist. When you share your worries it accomplishes a couple of things. Talking about it can result in thinking out loud and you might be able to find a solution or at least come to grips with your emotional dilemma. Other people may suggest ideas that you never considered.

Many of the big problems in life that fill our days and nights with worry cannot be resolved, and with those problems, you will need to find methods that help you manage your worry. It may be as complex as regular visits to a therapist, or as simple as reading a good book at bedtime to take your mind off your worries so you can go to sleep. The important thing is to find what works for you.

Copyright (c) June 2013 by L. S. Fisher

Http://earlyonset.blogspot.com

Caregiver Emotion #3 – Anger

When you are a caregiver for a loved one with a serious health problem like Alzheimer’s, you might find that you need anger management classes. Of course, you are going to be so busy with day-to-day duties that you aren’t going to have time for any additional activities.

What does it take to push your buttons and make you see red? Something that normally doesn’t bother you can trigger a rise in blood pressure when you are emotionally vulnerable. It is important to learn to recognize and address the issues that cause you to react with anger, especially if it is your loved one you are angry with.

The characteristics of Alzheimer’s can grate on the caregiver’s nerves. Repetitive behavior can be distressing to the caregiver. One of the early symptoms of Alzheimer’s is loss of short term memory which causes your loved one to forget they already asked you a question and that you answered them. It will do no good to point out that you already answered and to let your irritation turn into anger. It is better to answer the question again. Be aware that although your loved one might be asking you one question, due to failing communication skills, he may actually intend to ask a different question. Be vigilant to make sure your loved one’s needs are being met. Often, you can distract or redirect your loved one.

Pacing is another repetitive behavior that can bother a caregiver. Jim used to pace through the house constantly. The bad thing was that the minute I was distracted, he would pace right out the door and down the gravel road. He would never turn around and come back, so I would have to get in the car and go after him. After about five or six trips to pick him up, I would find that I was seething. Sometimes, it helped if I just went for a walk with him. Although, he might take off again given a chance, at least the walks were a good stress reliever for me!

Another thing that can anger a caregiver is unfair criticism of how you are caring for your loved one, especially from someone who isn’t helping. You may not feel like explaining every situation, but until someone has been a primary caregiver for a person with Alzheimer’s, they can’t comprehend what it’s like to walk in your shoes.

You may be angry at the disease that is taking your loved one away. Alzheimer’s has no cure and treatment only addresses the symptoms. To help assuage my anger at the disease, I became an Alzheimer’s volunteer. The Walk to End Alzheimer’s was a way to help the Chapter provide support and services to help families coping with dementia. I became an advocate to add my voice in support of research to find a cure. By helping others, I helped myself more.

You can’t predict every situation that is going to make you angry, but you can alleviate some of the tension by taking a step back before you react. You don’t have to count to ten but take a few deep breaths and think before you do or say something you will regret.

Humor helps tremendously. If you can see the humor in the situation, it may keep you from ever being angry in the first place. As long as your anger causes no harm to your loved one, you can also see the humor in that. 

Occasional anger is a normal emotion, and as long as you control your anger and not let it control you, it should not affect your ability to be a calm, patient caregiver. Of course, regularly taking a break from caregiving helps your mood and energizes you to continue providing a loving and safe environment for your loved one.

Copyright (c) June 2013 by L.S. Fisher

http://earlyonset.blogspot.com  

Caregiver Emotion #2 – Resentment

Resentment is an emotion you may not want to admit you have. You usually try to keep it at bay and not let it define the kind of person you are. Yet, for Alzheimer’s caregivers, it is hard not to feel resentment from time-to-time.

Resentment comes in many forms. You may resent other family members if you don’t think they are pulling their weight. Or, you may resent a family member who seems to take over and not listen to your ideas or opinions. In turn, if you are not the caregiver, she may resent you for not supporting her, or second guessing her, when she is making tough decisions.

At times, you may find that you even resent your loved one for not cooperating when you are trying to help. I know that when I tried to take Jim to daycare, he would balk and refuse to go most of the time. I wanted him to go to daycare so that I could keep him at home longer rather than make the nursing home decision. He didn’t understand that—he just knew he wanted to stay at home.

Resentment can build because life just seems to be out of control. All your well-laid plans go awry, and there isn’t a darn thing you can do to make life normal again. In the case of early onset, you may have been looking forward to retirement just to see your retirement dreams vanish. Instead of travel and relaxation, you are a full-time caregiver taking on an overwhelming job.

One thing is for sure—if you are consumed with resentment, you need to find a way to overcome this self-destructive emotion before it turns into anger. Have you ever thought that when you are resentful, it is such an internal emotion that you are often the only person affected?

Okay, now that you’ve identified an emotion you want no part of, what can you do? Think about the things that make you resentful, and seek a solution for each one. If you are feeling that you are doing much more than your share, ask for help. Often family members don’t even realize that you need help. You may seem so confident and capable, that they feel inadequate to try taking your place even for a short time.

If you’re resentful of your loved one’s behavior, just remember that the disease causes the behavior and your loved one is not just being willful. I always knew that Jim’s behavior was something he couldn’t help. Don’t get me wrong, he was always stubborn, but not unreasonable. No one can overcome the effects of damaged brain cells. My mom always said, “If a person has a broken leg, no one expects them to walk on that leg.” Her point was that Alzheimer’s was much more of a physical problem than a broken leg, and no one could expect Jim to think the same with a diseased brain as he did with a healthy one.

I coped with the resentment of having no control over the progression of the disease by focusing on what I could do. I could see that Jim had all the tests to determine he did not have an irreversible condition, and that he had the best treatment options available. Then, I volunteered for the Alzheimer’s Association because it provided a positive experience for me. It helped me to know that I could help raise funds for the Alzheimer’s Association support and services to benefit other caregivers. I became an advocate so I could educate legislators on both the state and national level on the urgency of funding effective treatments for Alzheimer’s, or better yet, a cure.

Resentment may be a feeling you want to hide, but it is a normal, human emotion. Just like all negative emotions, it can damage your physical and emotional health, or you can use it to make yourself stronger. Coping with resentment, can make you more assertive, in a good way, which can help you be a better caregiver, which in turn, helps your loved one’s quality of life.

Copyright (c) May 2013

http://earlyonset.blogspot.com

Caregiver Emotion #1 – Guilt

Recently, I read an article on caregiver emotions, and thought the idea worth expanding on. Having been a caregiver for ten years, I was familiar with all the emotions featured in the article, as well as several others.

Emotions can run high for caregivers, and I suppose that if you asked what a caregiver was feeling, guilt could easily be at the top of the list. Even good caregivers feel guilt no matter how unfounded. Some of us just have this little guilt complex that travels rampantly throughout our brains.

I don’t know about you, but I can manage to feel guilty over trivial matters. Some of the guilt associated with caregivers can be circumstances that seem entirely beyond our control. One of the guilt generators can be how a caregiver can be pulled in a lot of different directions at one time. I think this is especially true when the person with dementia is young. I know that I was conflicted with work and my responsibilities to care for Jim. Since I was only in my mid-forties when Jim began to need someone to watch over him, I didn’t think that quitting my job was an option. That is not the decision every caregiver makes, and I could see where both options could cause some feelings of guilt.

Had I taken a leave of absence, it would have lasted for several years because Alzheimer’s develops over time and can last for ten to twenty years. There were several advantages to keeping my job, one of which was to keep my health insurance. With good insurance, we were able to afford the diagnostic tests necessary to determine the type of disease and scope of the damage to Jim’s brain. The insurance meant we could afford the expensive medication. I was also able to continue making a living that paid the bills and avoided the stress and strain involved with having to make hard choices of medical care or paying the electric bill. Another advantage of working is that although Jim was never off my mind, I did have something apart from caregiving to fill my days. I was able to interact with other people at a time that Jim became silent and no longer carried on a conversation.

The downside was that I scrambled to find someone to watch him during the day. Between family, professional caregivers, my day off each week, and vacation, we managed to have someone with him at all times. It wasn’t easy, and had it not been for a flexible work schedule, it would have been an impossible situation. I still managed to feel guilty at times because I wasn’t there for him when he needed me, but in retrospect, I think it was the right decision for me.

Still, since I used all the caregivers during the workday, it meant that nights and weekends were my turn. Sometimes, Jim would be stubborn and uncooperative, and occasionally, I would lose patience. I beat myself up for those times when I blamed him rather than the disease. One time, I yelled at him and just about the time I felt totally like a worm, he started laughing at me over the colorful language I had used. We wound up having a good laugh over it, and it makes a happy memory rather than a guilt-ridden moment.

I think one of the most common reasons caregivers feel guilt is the nursing home decision. No matter how necessary, or thoughtful, the decision, it tends to make a caregiver feel that she has let down the person she loves. It is especially difficult when the family has promised they will never put their loved one in a nursing home. Caregiver feel like they have broken a promise when making the only decision that makes sense in the situation.

The nursing home decision was one I struggled with and put off as long as possible. Jim only slept a few hours a night and I was constantly exhausted. He began to wander off and no matter how careful we were, it only took a split second for him to disappear. It finally got to the point that we needed to put him in a safe place before he wandered off and we couldn’t find him. In that case, there would be no nursing home decision necessary. In my opinion, that wasn’t an option.

Unbridled guilt isn’t good for anyone. To help take control of your attitude, you need to have a reality check. If you are doing your best as a caregiver, and as a person, that is all you can do. There is a huge gap between reality and perfection. You don’t need to be the best caregiver in the world, you just need to be the best caregiver you can be. In the end, you need to make tough decisions that are not only best for your loved one, but also for you, the caregiver.

Copyright (c) May 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Friends Indeed

For some reason the phrase, “A friend in need is a friend indeed” has been on my mind all week. Odd, that a saying I cannot recall ever using in my life should be echoing through my brain nonstop.

I suppose many things could have triggered this thought. It could have been the news story of three women who forged a bond during a decade of captivity. Or it could have been the finalists on American Idol who seemed to value friendship over winning the title. Although, my DVR kicked off during the final moments, I later saw a picture of a frozen moment of time—Kree, with a look of pure joy, turned toward a stunned Candace. Maybe part of it could be tuning in to re-runs of Golden Girls and seeing the interaction between Blanche, Rose, and Dorothy—friends who fuss, fight, banter, and insult each other but still love each other.

These fascinating events could have been the impetus behind my obsession about the nuances of friendship, but I think it was more personal than that. I have been blessed with the gift of abundant friendship from some truly amazing men and women. My friendship list, and not the one on Facebook, reads like the Who’s Who of Friends Indeed.

My first friends are made up of family and co-workers. Over the past fifteen years, I’ve greatly widened my circle of friends by giving time to groups, clubs, and organizations. I’ve become friends with like-minded people I would never have met otherwise.

Although, I would love to honor all my friends, I’ve decided to limit it to one handsome southern gentleman and three women I met during my first Alzheimer’s advocacy visit to Washington, D.C. Ralph and I were party crashers at a reception for executive directors. We were board members who had come to the forum and didn’t know anyone besides the executive directors of our chapters. He and I wound up exploring the Capitol city and became fast friends. Ralph declared himself to be the oldest advocate, but he knew he had to do everything he could for his lovely wife.

In the first plenary session, a woman with smooth brown hair framing her face stood up to talk about her husband who had early onset Alzheimer’s. She echoed my own concerns that not enough was being done to find a cure, and that if one came, it was probably going to be too late. I understood her pain and heartbreak. When the session ended, I made my way through the crowd of people and introduced myself to Jane. It was like finding a long lost friend.

Later that first year, I met two more women, Kathy and Sarah. Kathy had a winning smile and flashing eyes. Sarah, slim and trim, was beautiful inside and out. We four women, plus Ralph, became inseparable. We had the bond of being caregivers for spouses with Alzheimer’s, and after sharing the heartbreak and sadness, we often regaled each other with humorous stories. The one thing we all had in common was a wacky sense of humor.

Just like in the movies, we met at the same place, same time each year at the forum. Sometimes we shared a few emails between, but it seemed as if the forum was our special time, our sister/brotherhood time. Each year was a reunion of heart friends.

Jane and I roomed together a few times. In our down time, we spent time people watching and making up stories about them. “See that woman in the slinky dress and high heels? She’s on her way to meet a lover.” Another year, we stood watch over the building across the street that had suspicious activity every night. Big limos parked in front of it and random lights came on in offices. “Spies!” we decided. We spent so much time together that some people thought I was from New York too. When the New York group bought tickets to a play at Ford’s Theatre, Jane insisted they buy one for her roommate.

Time passed and our reunions were sobered by death as we lost our spouses, one by one. Then one year Jane didn’t come. A few years later, Ralph didn’t come. Now Kathy, Sarah, and I meet each year with hugs, laughter, and tears. They each hold a special place in my heart, and I am so thankful to know them. We are friends indeed and our love for each other surpasses the bounds of time and distance.

Copyright © May 2013 by L.S. Fisher

http://earlyonset.blogspot.com

The Expected Unexpected

Winter stretched into spring and blew in with a vengeance in March. April came, and we breathed a sigh of relief, although spring was late coming. Earlier in the week, I noticed that my lilacs had finally bloomed and filled the air with their distinctive scent. May apples formed umbrellas and Missourians took to the woods in search of morel mushrooms.

May came with seventy-degree weather. Then, this morning the unexpected happened, and I woke up to snow. Seriously? Snow in May? Yes, I know, snow had been predicted, but I figured we might have some white flakes mixed in with rain, but it would melt as soon as it hit the ground. Instead, it snowed for several hours and the ground was piled with puffy white snow more befitting a winter day—not a May day.

Through my patio door, I could see green leaves covered with snow. It almost looked surreal. I can’t recall ever seeing Mother Nature so confused. I could see how a heating/cooling system could wear out trying to keep up with the drastic changes in temperature. A forty-degree variance in one week takes a lot of getting used to.

The unexpected weather made me think about other unexpected events in my life. Jim’s dementia was unexpected. He was so young that it took more than a year before dementia was diagnosed. Even after I learned everything I could about the disease, the change, though expected, was still unexpected. It didn’t seem possible that the man I knew could be consumed by a disease that erased memories and skills built over a lifetime.

Then, the expected outcome hit with unexpected emotions. It didn’t matter that I knew the disease was going to progress and take on a life of its own. A point came when our world changed, we changed too. We adapted and kept on going—taking one day at a time, or sometimes an hour at a time. Life became the peaks and valleys of human nature.

Being a primary caregiver for someone with dementia is challenging. Caregiving requires a talent for thinking on your feet, and developing an ability to expect the unexpected at all times. There is no way to sugarcoat it and say that you will always be at the top of your game. After all, the best caregiver in the world is only human. Even good caregivers make mistakes, have regrets, and may suffer from serious doubts that they can do this job day after day, year after year.

Have you ever noticed that sometimes the most difficult days in our lives are the ones that define us? When you face challenges and give it your best, you develop strength and self-assurance you will never get by running away. When you look at the positive, and seek out small moments of joy, your life can take on a new purpose.

After the snow quit this morning, I walked out into the yard to have a look around. As I looked back across the yard, I could see my footprints in the snow, wandering here and there, but clearly showing where I had been as I searched for the unexpected on this strange day in May. Then, I spotted my lilacs, peeking out beneath a layer of glistening, pristine snow. It was like finding a promise of better days ahead.

Copyright by L.S. Fisher, May 2013

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