Coping Skills – Mind, Heart and Life

As I mentioned in an earlier post, I ran across a link to the ALS Association’s ‘Living with ALS Manuals’. Since many symptoms with ALS are similar to Kennedy’s Disease, I explored the manuals and found some of the information relevant and potentially useful for those of us with SBMA. 

Today’s manual, “Coping with Change” also has some excellent insights into getting through the

shock of a life changing diagnosis and moving on with your life. It is meant for the individual as well as the family members. The author’s writing style is comfortable and personal – like he is talking directly to you. I highly recommend reading this manual no matter where you are in the process of living with Kennedy’s Disease.

Table of Contents

·         Coping with the Diagnosis
Beginning Your Journey
Reactions to the Diagnosis—The Author’s Observations

·         Coping in Your Mind
Accommodation
Acceptance
Self-survival
Decision Making
Feeling Different and Isolated

·         Coping in Your Heart
Caregiving 
Intimacy and Sexuality 

·         Coping with Life
Just Between You and Me 

“This manual is designed to provide a framework for you to consider thoughts, feelings, and responses to the diagnosis of ALS—in yourself or in a loved one. As such, it is written in an informal and personal manner. The manual consists of four sections. 

The first section, “Coping with the Diagnosis,” explores reactions people may have when they, a family member, or a friend is diagnosed with ALS. Understanding the broad spectrum of normal responses may assist you in knowing that you are not alone in this disease. Anxiety, depression, communication, and support will be discussed.

The second section, “Coping in Your Mind,” presents some possibilities for helping shape your thinking, as well as ways to live through the various transformations you will experience. Such issues as accommodation and acceptance, decision-making, and quality of life are discussed. 

The third section, “Coping in Your Heart,” covers caregiving and how an individual living with ALS can come to terms with receiving help from others. In addition, issues surrounding intimacy and sexuality and how these personal concerns are affected by ALS are candidly discussed.

The last section, “Coping with Life,” focuses on living life to its fullest. This segment looks at both the possibilities and the difficulties of managing your life with ALS.”

I will reiterate, no matter where you are at in the process of learning to live with Kennedy’s Disease, this manual will be helpful for both you and your family.

Coping Skills

Humana’s ‘Caring for Health’ newsletter this month had an interesting article called “Coping with a loved one’s decline.” The article’s focus is on longer life expectancy and older people living with chronic conditions … and the role that family caregivers face. Those of living with Kennedy’s Disease encounter many of these same issues.

It starts out commenting that the emotional toll of functional decline can be challenging for caregivers. “It is important to take note and to try to understand the meaning of behaviors, to reduce risks and liabilities, and preserve the older person’s dignity and quality of life.” This means that prior to a crisis, caregivers need to:

• Educate themselves on the issues and opportunities,
• communicate openly, and
• consider potential situations and emergencies and develop well thought out contingency plans.

As most of our family members know, caring for a loved one with a progressive disorder is never easy. The article recommends the following strategies to help reduce stress and improve communications.

• Obtain an objective assessment of the person’s declining capabilities from a medical professional.
• It might be difficult to have the person with Kennedy’s Disease talk openly with a professional. Pride is always an issue as well as fear and anger. These are all normal responses to lost capacity or capability. In some cases, the person will refuse to acknowledge that there is an issue at all.
• Acknowledging and empathizing with the painful feelings associated with the health issue can ease some of the frustrations.
• Also, reflecting on the person’s past accomplishments and recent ‘wins’ can help refocus the mindset of the individual.

• Attempt to share rather than take control of decision making.
• If at all possible, the older person needs to feel that their ideas and concerns, as well as their decisions, are being considered and are part of the decision-making process in regards to their life.

 

As a caregiver, it is just as important that you acknowledge your own feelings and emotions that relate to the loved one’s decline. Seek out help for depressive symptoms. Keep active and nurture your social support system so that when you need help, others are there for you. Accept that you have limits and no when you have reached them. Schedule time that you are not required to be a caregiver and participate in things that you enjoy doing, are relaxing, and help reduce stress.

And, most important, know your limits and don’t be afraid to ask for help.

How to handle Stress

I receive this email from my brother today and it came at a good time.  Yes, it is simple, common sense advice, but it never hurts to be reminded once in a while.

Those of us living with Kennedy's Disease know how stress can exacerbate our symptoms.  We need to be aware of our tolerance for stress and act accordingly. 

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A young lady confidently walked around the room while explaining stress management to an audience. As she raised a glass of water, everyone was sure she was going to ask the ultimate question: 'Half empty or half full?'

However, she fooled them all.

"How heavy is this glass of water?" she inquired with a smile.

Answers called out ranged from 8 oz. to 20 oz.

She replied, "The absolute weight doesn't matter. It depends on how long I hold it. If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm. If I hold it for a day, you'll have to call an ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes."

She continued, "That's the way it is with stress. If we carry our burdens with us all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on." 

"As with the glass of water, we have to put stress aside for a while and rest before picking it up again. So, as early in the evening as you can, put all your worries aside and focus on your family and friends. Don't carry the stress around with you through the evening and into the night. Then when we're refreshed, we will find it easier to carry the burden.

Asking “How will I die?”

This article is another one in a series about becoming your own advocate.

A blog article from David Ropeik does a nice job of explaining why it is important to plan for your death … more than what most of us do today. This thought process goes beyond having a will, a living will and a power of attorney. They are all important documents, but there is so much more to consider.

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Facing, and Planning For, How You Will Die (and why we don't.)
David Ropeik
 
This blog writes about how we perceive risk, and how those perceptions often don’t match the facts. We’re more afraid of some things than we need to be, and less afraid of some things than we ought to be, and those misperceptions – what I call the Perception Gap - get us into trouble. One of the things we should certainly worry more about, is dying. Not whether we will die, of course, but how. Given all we do to manifest control over how we live, it’s stunning how few of us have made any plans for the nature of how we will leave this mortal plane.

Most of us won’t die from the threats that seem to worry us the most. We will not be murdered, die in a plane crash, or succumb to the effects of climate change. Environmental contamination, terrorism, swine/bird/the next big flu…each may in fact kill a lot of people. But it is a pretty sure bet that most of us will simply get frail, and sick from heart disease (#1 cause of death) or cancer (#2) or chronic lower pulmonary disease (#3) or a stroke (#4), and need progressively more and more medical care while experiencing progressively less quality of life, even progressively less and less actual lucidity or even consciousness. No need to get morbid with the details here. Suffice it to say you and I will make the long goodbye more with a increasingly care-dependent whimper than with a neat clean final bang.

Yet, as likely as this is for most of us, and as commonly as we have watched our elders pass away under these conditions, few of us have made any plans for this part of our lives. As worried as we are about dying, we are not worried enough about how we will die. That Perception Gap poses all sorts of risks, not just for us, but for our families and loved ones who will have to deal with a lot of serious decisions and questions, simply because we haven’t worried enough to ask them in advance.

Whenever we feel like we have control, we are less worried. You probably think you have control over all those unpleasant-to-think-about end-of-life questions, like what should happen if you are unconscious and need machines to keep you alive, or when to say enough is enough when you’re so sick and frail that more and more medical care is having less and less effect fooling mother nature and postponing the inevitable. All you have to do is sit down right now and think through your preferences, and write them down, and assign someone to be your decision maker if you’re not able to make the call yourself. You have the ability to decide. You have control.

But if you’re like most of us, myself included, you have not had this hard conversation with yourself. You have not faced these difficult questions. You have no end-of-life plan, no health care proxy. Why? In part, because you know that whenever you want to, you can. That sense of control let’s you off the hook from having to face some scary unpleasant ugly stuff. That produces a Perception Gap, the risk that exists because your sense of control has allowed you to worry less than you should about a risk that you and your family are one heart attack or car crash or stroke away from having to deal with.

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Below are additional documents and information that will help you through this advocacy process.

• My Peace of Mind Plan is a PDF document that will help you to better plan and organize this process. 

• Another good read is End of Life Decision Making. The first paragraph of the article sums up the article: Americans are a people who plan. We plan everything: our schedules, our careers and work projects, our weddings and vacations, our retirements. Many of us plan for the disposition of our estates after we die. The one area that most of us avoid planning is the end of our life. Yet, if we don't plan, if we don't at least think about it and share our ideas with those we love, others take over at the very time when we are most vulnerable, most in need of understanding and comfort, and most longing for dignity. 

• One other PDF document, End of Life Decisions, does a nice job of explaining some of these decisions such as ‘do not resuscitate’ (DNR) and ‘do not intubate’ (DNI).

Prioritize to Gain Clarity

I read an interesting article the other day titled, “Simplifying your Life” by Manal. Within the article was something that I thought might be of interest to my readers.

The section on “Gain Clarity” … determining what is important … was thought provoking. I performed a couple of the exercises and they were eye opening. If you find this article interesting, try a couple of the exercises.

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Gain clarity

This is the first and most important step you can do for yourself: Be clear about what’s important to you. Clarity about your desires and priorities will guide you through simplifying your life and adding more meaning to your experiences. When you know what’s important to you, you’ll let go of the noise and distractions.
Picking a handful of important desires and values will make it easier to say no to everything else. You will focus on the things that matter and reduce the superfluous demands on your time and energy to the minimum.
 
How do you gain clarity?


The subject of clarity has been extensively covered in the self-growth (development) field. Yet, it’s one of hardest aspects of growth to actually do. It’s been a constant struggle for me. I’ve been experimenting with a combination of two tactics that are helping me tremendously in continuing to stay focused on what’s important—and keeping it simple.

The two ideas are not new. I’ve heard them recommended a few times, among other things. It’s the synergy of both that is effective in maintaining simple focus.

1- Make a list of what’s important to you
List the 3 to 5 most important values or aspects of life that matter to you most.

• What are you craving in your life right now?
• Do you want a meaningful connection? Do you want more love?
• Do you want financial freedom?
• Do you desire a healthy body?
• Do you value creativity, peace of mind, autonomy … etc.?

Sit with it and think about it. What would bring you more peace and fulfillment? What would your ideal life look like? Write down what you really want and value. List all the things that come to your mind and heart.

2- Set your 666 priorities
No. This is not an invitation to call out the devil. It’s an exercise in helping you prioritize your needs and desires. Answer the following three questions the best way you can.

Start with the first question and give it your full time and attention. Once you’re completely done, move on to the next one.

Don’t overanalyze; just go with your gut feeling and answer based on how you feel. Answering this question will add a self-imposed sense of urgency—based on your personal values and priorities, not those of others.

• If you had 6 months to live, what would you do in those 6 months?
• If you only had 6 weeks to live, what would you do in those weeks?
• What if you only had 6 days to live, what would you do?

By going through the process you will:

• Clarify what’s important
• Prioritize the important without stress or worry
• Eliminate the unnecessary

Now that you have the answers, start with the shortest-term answer. What would you do if you only had 6 days to live?

A personal example from the author.
I have a lot of things I desire to do. I’ve always started with the biggest things and ignored the smaller ones that nag at the back of my head.

Turns out that the most important thing to me in the shortest term is to simplify my financial life and make it as easy as possible for my family to deal with our affairs after I’m gone. If I only had 6 days, the most important thing for me would be to clean up my financial act.

I’ve complicated things over the years. I have numerous documents, accounts, and transactions known only to me. If I depart this planet today, I’ll leave my family with a financial mess that will take them months, if not a year to untangle. So I’ve been spending the last week getting rid of the unnecessary and streamlining the process. After I strip down everything to the basics, I aim to leave a document with my will that will serve as a step-by-step guide.

My 6-day action is going to take a bit longer. I had to stop a few times for family obligations and unexpected interruptions. But that’s okay. I know where to focus and what to do. More importantly, I didn’t commit to anything new and I eliminated a lot of smaller things that didn’t matter.

Once I’m done with cleaning up my financial records, I’ll have a look at my answers and determine what I’d want to do in the next 6 days. The next thing will be from the 6 weeks list. I’ll pick one item at a time and work with it—no excuses or distractions.

When you’re focused on a single important action with an added sense of urgency, you’ll be able to eliminate the excess without hesitation. And this is the core of simplicity.

Coping is another form of acceptance

Coping means “coming to terms with” and that is exactly what we must do when we live with Kennedy’s Disease. I have written several articles on how to cope or accept Kennedy’s Disease. It is such an interesting subject, however, that we can always use more help.


Today I am calling upon Dr. Phil for help and he has some interesting comments on the subject (http://www.drphil.com/articles/article/30/). In his article below I have noted several points that I consider important.

Coping With Disease

When someone in the family gets seriously ill, he/she might be the one infected, but the entire family is affected. Whether it's disease or chronic pain that has changed your relationship with a loved one, Dr. Phil has advice on how to cope:

• Don't let the disease become your identity (This is a great way to say this)
  You can manage an illness, or it can manage you. Are you becoming a full-time patient instead of a human being with a disease to manage? Investigate every avenue of rehabilitation and create the highest quality of life. Don't let the limitations of a disease become as handy as the pocket on your shirt. Do 100 percent of what you can do.

• Communicate (A couple of times a month I receive emails from care givers and family members asking how they can get their loved one to open up)
  If you don't talk about your feelings or how a disease is affecting the relationship, problems will only grow and eat away at you. Talk through the fear. Don't keep a stiff upper lip.

• Differentiate
  Direct your frustration at the disease, not at the victim. If the circumstances are making you feel angry and resentful, you may have a legitimate point. But if those feelings drive your behavior, your point will be lost. Yelling at someone or being overly critical doesn't help him become his better self.

• Accept your feelings (This is an important part of the ‘acceptance’ process)
  Know that you are not a crummy person if you don't feel sympathetic and compassionate at all times toward the person with a chronic illness. The toll of the illness goes beyond the infected person.

• Redefine the relationship (A good point and one that is often overlooked)
  Disease may force a family to adapt into different roles (the caretaker of the family becoming the one who needs to be taken care of, etc.), so you may need to come to a new understanding of what is "normal."

• Set realistic guidelines
  Outline what can be expected from family members as well as from the person who is ill. If you're sick, you can't be expected to do some of the things you used to do. If you've offered to help, you can't be expected to abandon your children and job because of it. Outlining reasonable expectations will prevent feelings of resentment on both sides.

• Confront your own emotions (This goes well with the ‘Communicate’ point above)
  If you are ill-equipped to deal with your feelings, you may grow cold or withdrawn. Hiding your feelings can only cover up the raw pain for so long -- and can also prevent you from being close to your loved one. Remember, monsters live in the dark.

• Don't force children to deal with adult issues (The transition has to be comfortable and designed for the child’s age)
  Young kids shouldn't be expected to go from being a child to the caretaker of a seriously ill parent. If a child has taken on the role of caretaker and now can't go back to being a kid again, you need to him/her them re-learn how to have fun, be silly and play again.

Coping with anger and frustration (follow-up)

A couple of weeks ago I wrote about a coping exercise that a doctor gave us on the KDA chat room. The article, Get Your Mind Out of the Gutter, provided an exercise routine to refocus when you are angry or frustrated or having problems coping. This week, one of my favorite bloggers, Mary Jaksch, wrote in ‘Goodlife Zen’ about the benefits of becoming more ‘mindful’ (refocusing on the present). It fit so well with the coping exercise, I felt it needed to be shared.

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How Mindfulness Transforms Ordinary into Extraordinary

By Mary Jaksch
When the mind is neither in the past or the future and we are completely present, our experience changes in a significant way. Suddenly life seems more spacious and more peaceful.

When we are mindful, we are available for life, and aren’t trapped in our own little world. Whether it’s peacefulness, or anger, or boredom, or elation, or fear – mindfulness allows us to notice what we are experiencing right now.
 

Mindfulness means bringing full, soft attention to the task at hand

All of us tend to let our mind drift when faced with a boring task. The good news is that if we pull ourselves back into the present moment, the task is transformed and boredom soon disappears. So, whether it’s washing the dishes, or cutting carrots, or driving in the rush hour – mindfulness can transform ‘lost’ time into islands of ease.

The first step of mindfulness is to notice what our experience of this moment is like. Whether it’s peacefulness, or anger, or boredom, or elation, or fear – mindfulness allows us to notice where we are at. But we need to go beyond that, we need to become intimate with what is there.

The second step of mindfulness is to connect so deeply that we become what we experience. [The coping exercise we were taught allows this to happen]

Pause for a moment, look away from the screen and take one complete, deep breath. Did you experience your breath? I expect you’ll say ‘yes’. But what about going deeper? Did you become the breath?
 

Mindfulness transforms

Thich Nath Hanh says: “There’s a seed of anger in every one of us. There is also a seed of fear, a seed of despair. And when the seed of anger or fear, we should be able to recognize it, to embrace it tenderly, and to transform it. And the agent of transformation and healing is called mindfulness.”

Mindfulness has the power to transform clinging into generosity, anger into compassion, and isolation into intimacy.


It’s important to be compassionate towards the part of you that wants and wants and wants, and never gets what it yearns for. And with the part that is angry, or sullen, or resentful, or irritated. And with the part that is lonely, aloof, or preoccupied. Or with the part that is fearful, anxious, or rigid. Meet these parts of yourself with tender regard.

Get your mind out of the gutter!

As Kennedy’s Disease progresses, one of the side effects is often an emotional one. Frustrations occur because we can no longer perform certain basic tasks. Or, we are put into situations that we cannot get out of without help … a fall, for example. Frustrations can easily lead to anger. To help us cope with this issue, the KDA had a special guest for Saturday’s KDA chat room.  This is a much longer article than normal, but it would not have been effective to break up the exercise into two posts.

Dr. Julie Bindeman is a psychologist licensed in Maryland and with a degree from George Washington University. Her focus is on life transitions and dealing with the emotions that accompany them. She also has expertise in depression, anxiety, grief and loss.

We all enjoyed participating in Dr. Bindeman’s coping exercise. She has given me permission to post the process in my blog. I am using the actual transcripts of her chat (with only minor changes ) in hope you will give the coping exercise a try.

Below is the transcript of her coping exercise as well as some comments from those that participated in the exercise.

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Dr. Bindeman: I wish that I had magic words or actions that could take away both the actual symptoms as well as the emotions that go with it. What I can help with are some coping techniques that might help the day to day or moment by moment. It can be common with loss to dwell on what had been rather than to try to be in the moment. Asking for help is a great strategy, but certainly not an easy one! So, I would love to share ideas on how to be present in the moment, and prevent your minds from thinking about those things that you had been able to do. Before we start, let me say we tend to not notice a lot of information that we take in with our senses.  And, since this is a whole different experience to do within a chat room versus face-to-face, I hope you all can bear with me. COPING EXERCISE To begin the exercise, locate an object that might be around you. It can be anything -- a rock, a piece of food, a screwdriver. Pick up your object. In order to be in the present, it's important to activate our senses--all of them! I'll need a little bit of leeway on this one, as I'm sure that depending on what your objects are; many of you won't want to necessarily taste them. We tend to use our senses of sight and touch most frequently, so I want to hold off on those two until the end. We will start off with the sense of sound. For those that have food or beverages, close your eyes and think about the sounds used to make them. For those with other objects, tap them on your hands, furniture around you, etc. Listen to the sounds that it makes and how those sounds differ depending on what it was tapped on. For the coffee drinker, you can also listen to the sound of the liquid swishing in the mug.  When you are ready, describe what that was like.

Alright, let's move onto the next sense. Let's try the sense of smell. Those of you with food/drinks are in luck with this one. It might be weird to smell your pen, for example, but perhaps you (and others that might have an object not really smell-worthy) can imagine smells that might accompany that object...an example, a place you might be to use the pen. There will be some objects where using certain senses is more challenging. For these, try to let your imagination take you to a time/place/location where you can associate the sense. Smells can bring up feelings and memories, so let yourself be open to those experiences right now as well. Ready for the next one? Let’s move onto the sense of taste. Again, this one might be challenging for some--I'm not sure I'd want to taste a pen or hole punch. I think those of you with water, omelets, or coffee, will really like the next sensory experience. But again, allow yourselves to associate--food in an office? Or whatever comes to your mind. Describe either what their object tastes like or what associations are made? OK, let's move onto the sense of sight. Really LOOK at your object. What colors do you see? Can you notice textures? What shapes are present? Try to study your object, as if you've never seen it before. Is there a sheen to it? Any scratches? On the pen, any cracks or the letters rubbed off? Hopefully, you are all noticing things to these everyday objects that you hadn't before. Feel free to let your minds wander. Describe what comes to mind. When you are ready, we'll proceed to the last sense ... the sense of touch. For this exercise, if you can, close your eyes, and let your hands experience your object. Feel for temperature, texture, shape, etc. And also, feel free to let your minds wander to anything that you might associate while you are touching your objects. Feel for ridges, edges, etc. See if from your hands, you can conjure up a picture in your minds. Closing Thoughts: One of the reasons I like to teach this exercise to my clients is that you can do it whenever you need it and with whatever you have handy. You now need to consider what trigger points (for example, what mood or situation) will remind you to use this exercise to get you back to living in the present. Using moods as a cue is a great way to remember this. It is so easy to stop being mindful and resent. The absence of these two things tends to be our default. We have little control over our past or our future, but we are able to do something with the present, whether we choose to embrace it or let it pass us by. I know that with the clients that I work with, it is so easy to get stuck inside yourself and to feel sorry for your own suffering. It's hard to remember that every human has their own kind of suffering. Someone earlier mentioned about laughter being the best medicine. This is also such a truism. What makes you laugh? When you are in a funk, seek out something that will make you laugh. Participant Feedback: Dr. Bindeman asked for feedback as to what using all five senses was like. Not necessarily specific things from each sense, but the overall exercise. “What did you experience, notice and learn?” These are some of the comments from the group participating: Slow down...enjoy life's little moments. I am realizing the opportunities available for experiencing everyday life. We all have limitations, and it's easy to get down. When we do so, then we fail to see our opportunities. Appreciate what we have ... not what is lost. This has been a great reminder to truly live in the moment and enjoy the pleasures of life. Don't think about should, could, would, etc. and be thankful for what we still have and can still do. Focus on the here and the now versus getting frustrated because I can’t do something. (Dr. Bindeman: Exactly--rather than look at what you "used to do" observe and note what you "are able to do."). I read a quote from Michael J. Fox, "If you worry about something bad happening and then it really does happen, you've suffered through it twice." I like to use this prayer, “God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, and the wisdom to know the difference.” If you spend your day worrying about tomorrow, you will not live for today.