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 you 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 worry? 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. One day, Jim made me really angry and I ripped off a few words that I don’t usually use. He recognized that fact and instead of it bothering him that I had lost my temper, he began to laugh about what I’d said. Pretty soon we were both roaring with laughter and anger was replaced by humor.

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 isn’t 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 take 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 an 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 the 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 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 like 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. The caregiver feels 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 fine 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 be the news story of three women who forged a bond during a decade of captivity. Or it could be 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 comes when our world changes, we change too. We adapt and keep on going—taking one day at a time, or sometimes an hour at a time. Life becomes 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 develop 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

http://earlyonset.blogspot.com

Advocates and Avocados

David Hyde Pierce, who has been a champion for Alzheimer’s began this year’s forum by joking about how the word advocate in Spanish is abogado, which sounds like “avocado.” It was his observation that “Avocadoes are like Alzheimer’s advocates because they are irresistible, and they have big nuts.” About Alzheimer’s disease, David said, “It’s not going to stop until we stop it.” Then, the most unusual call to action I’ve heard in the thirteen forums I’ve attended, “Avacados, let’s roll!”

Of course, we all laughed at David Hyde Pierce’s jokes because, let’s face it, he knows how to deliver a punch line. Jokes aside, just like us, he is here on a mission—flying back and forth from New York to take part in this forum. Because, like the more than 900 advocates packed into the large ballroom, he has a personal stake in finding a cure for this disease. He’s met Alzheimer’s and knows what a cruel disease it is.

The conference, as usual, was a whirlwind of activities. Dr. Collins, director of NIH, announced that in a unique step, NIH has designated $40 million of its 2013 budget for Alzheimer’s. In addition, an indication of the nation’s attention to the underfunded Alzheimer’s research funds, the president’s 2014 budget allocates $80 million to research.

My Mom and Glen Campbell

Glen Campbell joined us for the National Alzheimer’s Dinner. He entered the room a few feet from me, but I couldn’t get my camera turned on in time to get a picture. After dinner, I managed to work my way to the front of the crowd to get a picture of him and my mom. More important than the photo ops was the presentation of the Sargent and Eunice Shriver Profiles in Courage Award to Glen Campbell and his family. The “Rhinestone Cowboy” strode to the stage and accepted his award with humility that belied his outer showmanship.

After several other deserving awards, the Outstanding Advocate of the Year Award was presented to Dr. Ron Grant who has early onset Alzheimer’s. He thanked God and the Oklahoma/Arkansas Chapter for giving him the courage to face the disease. He said, “We live in the greatest nation on the planet, but I have to ask—in such a great nation, how many more families are going to have to suffer the devastation of this disease?” Gant concluded with a break in his voice, “How many more of us are going to have to die before we stand up and say enough?”

That, I would say, is the most important question of the entire forum. How many precious lives have been lost to the costliest disease in the United States? Officially, 83,437 died from Alzheimer’s in 2010. Other health conditions are often listed as the cause of death although the reason for the condition is caused by Alzheimer’s. In 2013, an estimated 450,000 will die with Alzheimer’s.

 We ended the conference part of the forum armed with statistics and tactics, but the most important element of our visits to the hill would be the power of our personal stories. As this abogado “avocado” prepared to charge the hill, I left the room with Dr. Gant’s haunting question echoing in my brain, “how many?”

Copyright by L.S. Fisher, April 2013

http://earlyonset.blogspot.com

April Rain, Storms, and Hopeful Sunshine

April is a kaleidoscope month with beautiful patterns and disturbing images. Rain and clouds bring sad thoughts. Storms can light the skies and simultaneously startle us with heart stopping thunder, wind, hail, and tornadoes. Along with spring comes a period of renewed hope when dazzling sunshine warms the ground and flowers, mushrooms, and foliage cover the earth with a lush blanket of beauty.

April is a month of memories for me. It was on a hot day in April when Jim left his body behind and went to a place where he could be whole again. April rain falls in my heart when I allow myself to remember those days of April when he was ready to leave, but I wasn’t ready to let go.

Perhaps, in lieu of sad thoughts I’ve packed April with activities. This month is full of conferences, meetings, and my annual trip to Washington DC to advocate for Alzheimer’s.

Saturday, I drove to Kansas City for an inspirational breakfast and spent the morning with some amazing women. We each introduced ourselves and talked about our first job and the most innovative thing in the workplace. We shared laughter and memories of those jobs and discussed how far the business world has advanced over the years.

Was it the talk of old times turned my thoughts to the past? Or was it just that this is April? The rush of memories expressed themselves with April rain flowing from my eyes and I made the decision to stop at the cemetery on my way home.

I pulled off the interstate when I saw the sign for the Missouri Veterans Cemetery at Higginsville. I stopped at Walmart hoping to find some flowers and instead settled for a colorful plant in a pot decorated with two birds facing each other. As I left Walmart, I drove through McDonalds and bought a cheeseburger and fries.

A few miles out of town, I pulled through the gate into the cemetery and drove to the columbarium. I had the peaceful, quiet cemetery all to myself.

I shared my water with the plant and placed it beneath Jim’s memorial. I sat on a bench and ate my lunch while I reflected on our life together. Jim would have looked forward to my impending retirement and trips to see family and friends. He would have wanted to spend time animal watching in the Rocky Mountains he grew to love so much. He would have been so proud of our children and grandchildren. He would have loved showing the grandkids his childhood places and sharing his stories and memories. That was what made Jim, Jim. We would have spent time having those soul-searching conversations about life, death, and the time between. Time. We ran out of it.

I sat on the bench reminiscing when I heard a sound behind me, breaking the silence. I turned to see…nothing but the committal shelter, with the flags flying high in front of it. I heard the noise again and realized it was the flags flapping in the breeze.

Jim’s physical presence has been gone for eight years. Not a day goes by without thoughts of Jim. He is imprinted on my heart where he’ll always share a part of my being. Was he perfect? No. But in many ways, he was perfect for me, and we seemed to complete each other.

After my time alone with Jim and our memories, I drove away. The tears vanished, and I thought about how fortunate my life has been. I’ve learned to be independent and comfortable in my skin. Loneliness and sadness visit only occasionally—as unexpected and quick as the lightening of an April storm.

I have lived a full and rich life that began on a December day in Hawaii when I married Jim. Our time together began on an April day when he returned from Vietnam and ended on another April day thirty-five years later.

Our time together ended, but life goes on for me. I plan to enjoy many years of fun, laughter, and joy. Family and friends are the essence of life, and they provide circles of love without beginning or end.

Copyright © April 2013 by L.S. Fisher

Earlyonset.blogspot.com