Presentations

Friday, May 31, 2013

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

Saturday, May 25, 2013

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

Monday, May 20, 2013

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

Friday, May 3, 2013

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