Ring the Bells

By Idelle Winer

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.

—Leonard Cohen, “Anthem”

Remember the exaltation of discovering a new musician or poet? In July 2009, my husband Brian had that experience after watching a DVD of Leonard Cohen’s Live in London concert. Brian enjoyed a variety of music genres, ranging from rock music to Broadway musicals, but did not listen to Leonard Cohen. After viewing the DVD, however, Brian became Cohen’s biggest fan—he dubbed it the “religion of Lenny.” Brian even took the DVD to the ICU when he had his feeding tube placed in August 2009, discussing the meaning behind many of Cohen’s lyrics with the hospital’s rabbi and ICU nurses. Brian was hooked, listening religiously until the end of his life.

Brian remained in relatively good health in retirement until October 2008, when he developed breathing problems. He had a setback in late October when he collapsed from shortness of breath. Unfortunately, our daughter Leah had just walked in the front door when this event occurred. We rushed Brian to the hospital, where he remained in the ICU for almost 2 weeks. He was placed on a Bi-PAP machine to support his breathing.

Until June 2009, Brian did well at home. Although confined to a wheelchair and immobile for the most part, Brian could still speak, project his voice, and swallow food (he loved to eat!). He could go for short periods without use of the Bi-PAP, which made it easier for him to communicate and eat. However, due to a decline in his breathing, we had to decide whether Brian should undergo feeding tube placement. Brian did not want any invasive life-sustaining measures, but because he could still speak, he went ahead with the procedure.

Over the next 6 to 9 months, Brian lost his ability to speak clearly. Verbal exchanges that previously took seconds could consume half an hour, and speech required unprecedented effort, given his respiratory difficulties. I looked into a variety of assistive devices and microphones to help project his voice, but this proved unsuccessful because Brian could no longer enunciate, his voice was soft, and the Bi-PAP mask, which he now wore full-time, was incompatible with most microphones.

I recall a conversation in 2010 with Beth Barrett from the ALS Association, in which we discussed various topics, ranging from types of assistive devices to the decision of whether to undergo invasive, life-prolonging procedures. Beth explained that every ALS patient draws a “line in the sand” and defines what constitutes quality of life. In retrospect, the ability to talk and be understood was Brian’s line in the sand.

Photo for Blog #3
Brian and Idelle, July 2007

That brings me back to Leonard Cohen. Brian found joy, solace, and hope in the lyrics of many Cohen songs. As Rabbi Lynn Goldstein stated so eloquently in Brian’s eulogy:

Brian had a verse that he loved, from Leonard Cohen’s Ring the bells [“Anthem”]. He loved the chorus particularly, and quoted it often, especially when things were difficult. This song reminds us that even in the most difficult times, there is a crack and light will inevitably come in. In his last years, there was no way anyone could cure his illness. There was no way for him to return to the healthy individual he had been. But, Brian believed deeply that there was still light, that nothing was perfect, but he would do his very best with the hand dealt him, that he would look for the light, let it in, and enjoy living in that light with those he loved to the very best of his ability, with all his heart, with all his soul, and with all his might.

Brian passed away at home on the morning of August 24, 2010. He was 60 years old.

What challenges have your family faced with ALS? How have you coped? Please share your experiences in the comments section. Let’s continue the conversation.

For more information on ALS and resources for caregivers, please visit www.alsa-stl.org.
You can read more about Idelle and Brian’s journey here.

Caregiver Confidential: Can Hope and Acceptance Coexist with an ALS Diagnosis?

By Idelle Winer

I believe in the sentiment, “Hope springs eternal.” In the context of illness, hope is the belief that a patient will improve. Acceptance, on the other hand, suggests a patient’s coming to terms with a disease. Therefore, how do you reconcile hope with a diagnosis of ALS? Can hope and acceptance of a terminal disease coexist? I think the answer is yes.

But first, how did Brian finally tell me that he had ALS? From 2005 to 2007, I observed a slow but steady decline in the use of his right hand. Brian had trouble signing his name, cutting his food, and tying his tie for work and often asked me for assistance. Of course, I suspected that Brian had ALS but did not confront him. (I preferred a state of denial.)

One Sunday in May 2007, we were in the family room, waiting for the arrival of our daughter Leah’s friend Lauren, who planned to store some belongings in our basement over the summer. Just before the doorbell rung, Brian blurted out that his possible diagnosis of ALS had been confirmed. He was concerned that he would be unable to help Lauren move her belongings into the basement and needed to create a credible cover story.

The story we concocted was that Brian fell on our driveway over the winter, resulting in an injury to his right hand. To make the fall appear realistic, he previously purchased a hand brace to cover most of his right hand and fingers and disguise the muscle wasting that was apparent without the brace. (The photo of Brian in my first post shows the brace on his right hand.) Family, friends, and professional colleagues believed this story, allowing us to keep our secret for a few more months, even from our daughter Leah. Brian finally told Leah in July 2007, which was the only time I saw him show emotion about his diagnosis.

leahbrian2
Brian and Leah, May 2009. Last photo of Brian.

After the truth came out, we had our first home visit from Beth Barrett from the ALS Association. Beth’s compassion, knowledge, and support were indispensable to our family’s ability to cope with the many challenges of the disease. We had a true partner and friend in Beth, someone we could rely on.

How specifically did hope manifest for Brian? I think that Brian found peace in knowing his ultimate fate; in other words, having a terminal illness like ALS set him free from the false hope of recovery. His acceptance also provided a model for us, and we took his lead regarding how to respond and think about his diagnosis.

How does hope manifest for your family and loved one? Please share your story in Caregiver Confidential. Let’s continue the conversation.

For more information and resources about ALS, please visit alsa-stl.org.  You can read more about Idelle and Brian’s journey here.

Caregiver Confidential: Diagnosis and Denial

Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer.  Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.

Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.

Late in 2004 Brian started to develop problems with his right hand and thumb. His earliest symptoms were that he could not tear sheets from a legal pad and he was dropping pills. Brian went to his primary care physician in May 2005 when his symptoms did not improve. Brian was then referred to a neurologist for evaluation. In July 2005 Brian underwent further testing at Washington University and was told that he may have ALS, which required follow-up to establish a definitive diagnosis.

I vividly remember the July day that Brian broke the news to me. It was late afternoon—a sunny, ordinary day really—and I was watching TV, waiting for Brian to return from neurological testing. I wasn’t particularly concerned that anything was seriously wrong and in fact thought his right thumb weakness was from an old high school football injury.

When Brian walked through the front door, he looked stunned. He calmly related that he could have ALS but would not know definitely for a while. I started to cry. How could he have such a devastating diagnosis? How and why did he get this terrible disease? How could this be happening when our daughter was starting college in the fall and at this stage of our lives?

Brian David Winer 7121950-8242010
Brian, July 2007

Reflecting back, my first awareness of ALS was from watching The Pride of the Yankees after school as a young kid. I wasn’t particularly interested in baseball but was deeply impressed by the inspirational and courageous message of Lou Gehrig. Although I didn’t understand the first thing about ALS, Lou Gehrig’s luckiest man speech left an indelible mark on me. It seemed ironic that Brian had ALS because his favorite baseball team growing up was the Yankees, and now he shared the same disease as one of his heroes.

For the next 6 months, I read as much information as I could on ALS. The ALS Association was a wonderful resource of online information, ranging from symptoms to clinical trials and research, to caregiver resources. I was so desperate for an alternative diagnosis that I even called the St. Louis office, looking for reassurance. I constantly stared at his right arm, hand, and thumb to see if there were any visible signs of muscle wasting. After each office visit between August 2005 and February 2006, I asked Brian if the neurologist was any closer to making a definitive diagnosis. Each time Brian told me his symptoms were about the same with little change or progression, allowing me to cling to the false hope that there was another explanation for his symptoms. Despite my wishful thinking, Brian was officially diagnosed with ALS in February 2006.

How did your loved one learn of his or her diagnosis? What were the initial symptoms that brought your loved one to a physician? How did you and your loved one cope with the diagnosis? Please share your experiences in comments section and  let’s continue the conversation.

You can send your questions or post suggestions to Idelle at alsastl@alsastl.org. For more information and resources on caring for a person with ALS, please visit alsa-stl.org.

Growing Up With a Parent Who Has ALS: What I Learned

By Kelsey Lester

Growing up my chores included: cleaning my room, doing the dishes, putting the laundry away, and suctioning my dad’s throat cannula. The last chore isn’t typical of most kids, but my growing up wasn’t typical. My dad was diagnosed with Lou Gehrig’s disease in October 1993. I was born in May of 1995, and my dad is still kickin’ it, so my relationship with ALS has been longer than most. My childhood and teen years didn’t only include household chores that were different, but also different life lessons.

So, here is what I learned growing up in an ALS household…

I learned about how fragile life is.

jeffand kelsey
Jeff Lester and Kelsey Lester

Some of the first memories I have as a kid are of me laying on the grass, staring up at the sky, and trying to understand the concepts of life, death, and why we are on Earth. While this isn’t the typical worries of a kindergartner, these concepts are what I had to process through at a young age. I had to understand that life is a gift that needs to be cherished and shared with others. The idea that our time on Earth is fleeting and could change or end at any moment has been a focal point in how I choose to live my life. My sisters and I are all people who try to live each day to its fullest and achieve all that we can, which I know is a direct result of our understanding that life doesn’t always go as planned.

I learned about tenacity.

Tenacity, perseverance, and confidence are the attributes I have seen in my dad as he has battled ALS. Seeing these traits in him while growing up has shaped how I view the struggle of life, and to what extent I let life get me down. Life can throw curve balls at us at times, but doesn’t mean that we can’t stand back up after we’ve been hit. My life isn’t an easy walk, but I can stand tall knowing that nothing can happen where I can’t choose to persevere. My dad used to joke when I would have to give my life quote for school activities that it would be, “build a bridge and get over it,” which I did use for my high school graduation speech. My dad’s fight has shown me that each mountain has a valley, but that the trek back up the mountain is worth it. I know that life can be hard, but that in the grand scheme of things, our lives, even with ALS, are filled with blessings.

Kelsey_and_Jeff

I learned what loving another person means.

Being in an ALS household doesn’t end with my dad having ALS. Having a parent who has ALS, also means that I have a full-time caregiver as a parent. My mom has stood next to my dad through all the stages as his mobility decreased, and has taken care of him 24/7 for over twenty-two years. My parents are a testimony that love and marriage aren’t only about the milestones you want to experience with another person, but also about the sacrifices you are willing to make for another person. My parents have sacrificed everything for each other and our family, which shows since they are still married in a society that has a divorce epidemic. My parents aren’t perfect, but they have, through ALS, set a standard for what love is.

And most of all…

I learned to laugh.

My family is always laughing. I would say that my parents have more reason than most people to be angry at the world, and to live a life of negativity. Instead, my parents chose positivity. With each hard time that my family has gone through, we have been there to pick each other up, and enjoy our time together by making fun of each other and the world that we live in. While I would say the downside to this is my crude sense of humor, I know that the upside of being able to laugh anything off and truly enjoy the company of others. Nothing can stop the laughter of my family, not even ALS.

KelseyLestergradpic
Lisa, Jeff and Kelsey Lester

Kelsey Lester, a recent graduate of Missouri State University, served as a communications and marketing intern for our Chapter last summer, and was our Walk to Defeat ALS Facebook Live correspondent this past June. Since getting her bachelor’s degree in May, Kelsey has moved to St. Louis, traveled to Africa, and is preparing to apply to law school.

For more information on ALS, please visit www.alsa-stl.org.

Practicing Relaxation with the Body Scan

Holly Pinto is the owner and director of The Body Therapy Center and School of Massage, Ltd. In Swansea, Illinois.  She has been practicing massage and a variety of different therapies since 1989.  We are excited to have her contribute to ALS Connect as a guest blogger. 

The first time I heard the word ALS it was when my father was diagnosed when he was 78 years old. Soon after his diagnosis, we figured out that the “nerve disease” that my aunt had died of was actually ALS. And just recently, I lost my niece  from this horrific disease at just 40 years of age. This post is for you the caregiver and you the person LIVING with ALS.

Being diagnosed with a terminal illness, especially one as progressively debilitating as ALS is, can cause deep fear and anxiety and enormous amounts of stress. But there are ways to combat those emotions and diminish that stress — research shows that individuals can make a quantitative change in their mind by actively committing to a mindfulness practice. As an educator of wellness and meditation for the last 25 years, I know first-hand that lowering your stress level and getting control of your mind and thoughts can make a huge difference in your life. In fact, some mindfulness practices can help with anxiety, insomnia, and have the ability to slow your heart rate down which in turn can make you feel more relaxed.

Our autonomic nervous system – which controls your heart rate and breathing among other things – is divided into two parts: one part, the sympathetic side, is wired for fight/flight and the other, the parasympathetic, for rest and relaxation. When we are stressed our bodies don’t know the difference between fleeing from a saber-toothed tiger or the worry that we are feeling on a daily basis. It triggers the same stress response. When we  deal with stressful situations — sometimes many times a day —  physical symptoms such as insomnia, anxiety, etc. result.  The Body Scan helps to raise our parasympathetic side and lower the sympathetic side of the autonomic nervous system.

As you begin your mindfulness exercise and practice the Body Scan,  it is important to think about a short mental statement or a deep desire and repeat it before and after your practice. It could be a desire to do something different or change something in your life. It should express your commitment to keep a powerful and positive force alive. It is not something that will happen in the future; it is something you believe is happening in present moment. It is profound and heartfelt. Yogis call this “Sankalpa”.

The Body Scan (Learn your body scan by having someone read the body scan to you until you can do it yourself. Go through each step very slowly, pausing to really feel each of your body parts)

Getting Started:

Lay down in a comfortable position where you will not be interrupted for at least 20 minutes. You can do this exercise sitting up, too. Once in a comfortable position, ask yourself if you can make yourself 10 percent more comfortable and shift your body until you are the most comfortable you can be. Try to separate your limbs by keeping your legs spread apart and your arms and hands out to the side with palms up. Try not to move for at least 20 minutes. Take some nice deep breaths until you feel your body beginning to relax and settle down.

Setting your deep desire

Set your Sankalpa or deep resolve. For example, “I am safe and I am whole, I am at peace, I am already whole and already healed, I will achieve total health.”  Repeat this over and over. Your resolve or deep desire isn’t coming so much from an intellectual place as much as a deep place in your heart. One of the intentions of your Sankalpa is to change your direction of thinking on a daily basis and change your perceptions to make your life more balanced and healthy.

Feet

Once you are settled bring your awareness down to your feet. Feel your feet. Notice the way your feet make contact with the floor. Are your shoes and socks covering your feet? What do they feel like touching your skin?  Bring your awareness to the top of your feet, the bottom of your feet, the sides of your feet. Bring your awareness to your big toes, your baby toes. Notice heat, pressure. Any sensations you may feel in your body.

Ankles

Notice your ankles. The front and back of your ankles. The inside and outside of your ankles.

Calves

Up through your calves. Get a sense of your calves three-dimensionally. Sense your whole calf. Not just the front of your calf or just the back of your calf.

Knees

Bring your awareness to your knees.

Thighs

Bring your awareness to your thighs. The front of your thighs. The back of your thighs, the inside and outside of your thighs. Bring your awareness up your thighs and notice the connection of your legs into your pelvis.

Pelvis

Notice the weight of your pelvis as it makes contact with the floor, bed or mat.

Torso

A lot of things are happening in your torso: digestion, elimination, and breathing.  Your heart lives in your torso, a little left of your sternum in your chest. What do you notice? Can you feel your torso spreading out as you breathe in and then shrinking back as you breathe out? Can you notice anything about your heart? If not, that’s ok. There are no expectations. If you find yourself getting confused by any of this just lay there and breathe in and out and let everything else go.

Shoulders

Bring your attention to your shoulders, your upper arms, your forearms, your wrist and your hands.

Neck

The skin around your neck.

Face

Your face…can you sense the air moving in and out of your nostrils. Can you notice the air that is coming into your nose is cooler than the air coming back out? Notice your eyes and your eye lids that are closed. Your mouth and taste inside your mouth.

Scalp

Notice your scalp and your hair.

Ending

Notice as much as you can your whole body and the sense of what it feels like to be in your whole body. Laying there not segmented out but a whole body. Lay there enjoying the stillness. If you can notice how the stillness supports you and surrounds you. When you are ready slowly begin moving your fingers and toes and when you are ready slowly open your eyes. Good job!!!

It takes courage to live in our bodies and to listen to our hearts in a still and quiet way. Take your practice slow and this month just practice your body scan anytime you are feeling stressed or before you go to bed. Let me know what you notice and what is changing in your life as you begin to integrate relaxation exercises into your life.

Peace, Holly.

Understanding chronic & terminal illness: A guide for healthy people

By Stan Goldberg

This week’s blog post was originally published on thecaregiverspace.org.

A client who was dying once said to me, “Every day I feel as if I’m on one of those exercise boards that rest on a ball. Just when I steady the damn thing, it starts moving and I’m struggling again to balance myself. Why don’t people realize that’s what my life has become?”
I’ve heard similar descriptions for thirty years from clients and patients living with chronic and terminal illnesses. Many believed that not only did they have to deal with the effects of their illness, but also the unskillful acts of friends and loved ones who didn’t understand what they were experiencing. And that’s the purpose of this article: to explain it.

There’s a constant interaction of elements that contributes to mood unpredictability in people with chronic and terminal illnesses. From my experience, the most critical ones appear to be a lack of control, loss, physical effects of the illness or medication, and uncertainty.

The elements

Lack of control
Imagine for a moment that your attitude about living is heavily shaped by people, objects, and activities. It could be an abusive boss, a landlord intent on evicting you, or a car that constantly breaks down. While oppressive, you could act. You could move on to another job, find a new apartment, or use public transportation.

But what if none of these choices resulted in acceptable consequences? If you quit work, you might not find another job in this economy. If you gave up your apartment, you might become homeless. If you couldn’t afford to repair or replace your car and there was no public transportation available, you’d be stuck in your neighborhood. A lack of control would, at the very least, make you disagreeable.

People who live with chronic or terminal illnesses constantly experience a lack of control. If I have an advanced case of CPOD (chronic pulmonary obstructive disease), I know that without proper medication and the constant use of oxygen I’ll die. On one side of the scale is death. On the other, the side effects of the medication, minimal movement, and oxygen. No contest. I’ll choose the medical protocol—not because it’s something I desire—but rather because it’s something more acceptable than the alternative.

Loss
The feeling of losing something that gave your life meaning is profoundly upsetting. And it happens often with chronic and terminal illnesses. Unfortunately, the magnitude of loss is often thought of in terms of someone else’s sense of what’s important. An active person might think that no longer being able to walk is tragic, but the inability to knit is inconsequential. Yet for someone with rheumatoid arthritis whose entire life centered around knitting, the loss is devastating. Many chronic and most terminal illnesses result in life-changing losses. The ability to knit may disappear, but its memory is constantly present.

Physical Effects
We think with our minds, not our bodies. But we know the relationship between mind and body is strong. In my hospice work, I’ve watched how the physical effects of a tumor changed a calm, peaceful man into a paranoid, aggressive person. While he sometimes understood that the cancer was changing him, during those lucid moments he realized that he had no control over what was happening to him. The ability to think and act rationally can be effected by changes in metabolism and the occurrence of pain. I’ve never had a client or patient who chose to be moody or act irrationally. There always appeared to be a cause. And often it was a physical change.

Uncertainty
Most of us want predictability in our lives. If I buy an apple tomorrow I expect that it will taste similar to the one I ate yesterday. When the traffic light turns green for me, I expect cars to my left and right to stop so I can go through the intersection without being hit. But what if that apple I had yesterday tastes like an onion today or it became optional for anyone facing a red light to wait until it turned green? I could stop eating apples and wait until no cars were present before going through a green light. But what if the unpredictability spread into other areas of my life? My anxiety would become palpable. We may want some uncertainty and a bit of spontaneity to spice up our lives, but it’s predictability that allows us to function sanely on a daily basis.

For many people with chronic or terminal illnesses, predictability may be an illusive state of being. One day, the illness is controlled either by medication or who knows what, the next day it comes on with the power of a sledgehammer. On good days, although there’s jubilation, there’s also the fear that the reprieve will end. On bad days, there’s the fear that it will persist and never relent. Wondering if the pain will ever stop might make it difficult for someone to be supportive when a friend complains how his wife never lets him choose the movie they’re going to.

For someone with a terminal illness, there is certainty, but it’s not desirable: there’s the knowledge that the illness will continually progress. The uncertainty involves the course it will take. People with terminal illnesses often wonder how much pain they will have to endure or the extent of reduced abilities until the body just gives up.

The interaction
It is difficult to prevent the effects of any one of the above elements from having a negative impact on relationships. Living with all of the elements, and quite often having to deal with them simultaneously, is mind-boggling. Experiencing chronic and terminal illnesses is not a static event. It’s constantly changing as each of the elements takes its turn effecting one’s mind and personality.

Some very wise people maintain that illness doesn’t necessarily have to control the mind. By understanding that pain and suffering aren’t internal, but rather our reaction to events, the effects of chronic and terminal illnesses can be reduced or eliminated. As a Buddhist for most of my adult life, I would like to believe that. But as someone who has been involved in the lives of people who have chronic and terminal illnesses, I know the difficulty in believing in a concept when all you can think about is the loss of something that was critical to your happiness, unrelenting pain, or a future envisioned, but unobtainable.

What I have found that’s comforting to people I serve, is the expression of acceptance and compassion for what they are experiencing. The anger and sarcasm vented in my presence is rarely about something I have done (I certainly hope not!). But rather, it’s the effects of trying to balance that board on top of the ball. As a monk once said to me, “We do the best we can, given the circumstances of our lives.” So when someone you know who has a chronic or terminal illness appears to be cranky, unappreciative, aggressive, or distant, it’s not about you. The balance is probably out-of-whack.

About Stan Goldberg
Stan Goldberg is the author of eight books in four languages. LESSONS FOR THE LIVING: STORIES OF FORGIVENESS, GRATITUDE AND COURAGE AT THE END OF LIFE is his memoir of being a bedside hospice volunteer for six years while battling prostate cancer; and, LEANING INTO SHARP POINTS: PRACTICAL GUIDANCE AND NURTURING SUPPORT FOR CAREGIVERS, focuses on caregiving for loved ones who have a progressive or terminal illness.

ALS Caregiving – Preserving Your Relationship with Your Partner

Illness, including ALS, can attack without warning and can happen to anyone. No two people with ALS are living in the same situation and no two ALS illness courses will exact the same toll. But all couples, where one partner is placed in the dual roles of loving partner and personal care provider, will experience the greatest test on a marriage and that of their commitment to it.  It is essential that couples continue to function as partners, and not become only patient and caregiver.

With the physical changes brought on by ALS, comes a shift in the balance of power that is naturally created in all relationships.   As one partner becomes less physically able; the other becomes more physically active to make sure that the household functions, the kids are raised and/or cared for, and provide physical care and emotional support for their loved one.  Without paying attention to our emotions, resentment can easily crop into our lives.

How To Preserve The Relationship?

  1. Maintain equality within the relationship and find ways for both partners to make significant and meaningful contributions. Take advantage of the resources available to you. The power of technology can allow a person with very little controlled muscle movement to become an active member of the family and its day to day operations.
  2. Keep communication open through family meetings and make decisions as a team. Remember, to try and end the ALS journey as you started it, a team fighting together.
  3. Focus on your Relationship: Research indicates that the better you feel about your relationship with the person receiving care, the less stress you will have. Talk with him or her. Get counseling. If there is serious conflict, invite a third person–one you both know and trust–to help mediate. The results can be gratifying: spouses with the highest morale generally attribute it to the continuing companionship and good relationship they have with their partners, which can also help sex lives to stay healthy.
  4. Get help! Take advantage of resources available – especially respite care. This allows caregivers to get away from relentless and potentially overwhelming responsibilities for an hour, a day or several weeks by having skilled care personnel stay in the home, or by having their partner stay in a facility which provides an appropriate level of care.   Most caregivers report that providing personal care for their spouse takes away from the sexual intimacy needed to maintain strong bonds of marriage.
  5. Stay Independent and Avoid Isolation:  Keep in touch with friends, have people over/visit them, going out independently will help decrease isolation and foster independence.  Not many married couples, independent of ALS, spend 24 hours together and do all activities together
  6. Pay attention to each other’s health, both physical and emotional. Honor each other’s need to manage stress, relieve frustration and grieve by taking enough time for themselves.
  7. Manage Stress – Stress can cause physical and emotional exhaustion. Its symptoms include diminishing self-esteem, a negative attitude, a loss of concern for others, a loss of focus on your own life. If let unattended for caregiver’s, it can lead to burnout – It’s real and It happens!
  8. Get Your Finances in Order: Regardless of how little or how much you have, get some help sorting through insurance policies, retirement programs, social security and other government entitlements to find out what there really is to draw on. Keep in mind that specific benefits and programs change from year to year, so re-check periodically. This will help to minimize endless worry about financial strain.
  9. Accept Help: Don’t try to manage ALS all alone.  Taking advantage of the offers of help that come from family and friends, can make time to be set aside as couple time. It is important to continue dating activities, or those activities celebrating your love for each other that were in place prior to ALS.

You may not be able to do anything about ALS being in your life, but you control how it impacts your time, energy, attitude and quality of life.   Finding ways to acknowledge and nurture your personal life will bring new energy and enthusiasm into your life as a partner, patient, friend or caregiver.   Even the strongest individuals, and marriages may need extra concern and help along the path of ALS.

For more information and resources on caregiving, please visit http://www.alsa-stl.org.