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2015 Blog Posts

How Can I Help?

I get a lot of offers to help; some sincere and others just being polite. What I have found is that people want to help but they don’t know how and realistically, many have their own problems and challenges so they can’t help in a way that involves time or money.  While I really could use the help, I don’t want to put anyone out so I usually don’t ask BUT, if you ask me if you can do something for us, I may very well say, “yes.” Here are some ways you can help. Inexpensive and limited time commitment: continue reading at: https://multiplesclerosis.net/caregiver/caregiver-perspective-can-help/

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Rules of Engagement

No, I’m not talking about the “take no prisoners” rules but instead am referring to rules associated with social engagements. This is the holiday season and there are family gatherings and parties at work or at friend’s home that are cherished events and a great way to keep those social connections. However, participating can be a challenge and a heartbreak for those who are mobility challenged and their caregivers. If you are having an event and want to invite someone who is a caregiver or gets around in a wheelchair or uses other equipment for stability, please consider the following: Continue reading at https://multiplesclerosis.net/caregiver/caregiver-perspective-rules-of-engagement/

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Tested By Fire

I was listening to a Bible commentary today and the commentator was talking about how God takes us through trials in life that prepare us for events yet to come. He described how precious metals are often put into fire for purifying so that the impurities are removed and the remaining metal is stronger and better able to withstand pressure and stress thereafter.  I can see how that has been the case in my life. People often ask me how I do what I do.  How can I survive on five hours of sleep a night, hold down a very intense full-time position that often requires more than 40 hours a week to complete but yet be there night and day to take care of Lynn without losing my mind?

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What Do you See When You See Me?

What do you see when you see me? Do you see what I’ve come to be? Do you see the mask I wear That hides the truth of all I bear? Do you see my strength, my skill My constant running all uphill? Do you see my desperate hope That with each change I still can cope? continue reading at: http://multiplesclerosis.net/caregiver/what-do-you-see-when-you-see-me/

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Struggles with Skin Care

I am obsessed with Lynn’s skin. Many years ago I worked as a home health nurse and I saw some terrible bed sores that started out small and then progressed to craters. Some of the patients had their entire backsides destroyed. Most of the breakdown, I expect, was due to inattention but some was also due to poor nutrition and just the disease process the person had. With progressive MS, secondary or primary, the person often is in a wheelchair or in bed most of the time. In either situation, the person’s ability to shift their position is very limited or maybe non-existent. continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-struggles-with-skin-care/

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Stages of Loss: Acceptance

The final stage of experiencing loss or grief is acceptance. Some people never get there; some get there quickly. Most of the time people step into and out of acceptance at various times based on what is happening around them or new challenges they face associated with the loss. For the caregiver, at least my personal experience, is that I moved into the acceptance stage long before my husband did. In fact, I’m not sure that he’s actually there yet. I know he has finally accepted the fact that he has MS but I’m not sure he has accepted the fact that his physical limitations are permanent. And maybe that’s a good thing. He continues to exercise muscles in anticipation that he may one day walk, or sit up independently, or be able

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Joy Comes in the Morning

Many of my blogs focus on the feelings of loss, anger, fatigue, and the negative side of caregiving because that is what we caregivers find to be the most difficult to manage. It’s much easier to cope with happiness and being well-rested. But today I want to talk about “acceptance,” the final stage of grief and loss. Acceptance is when you stop fighting the loss and have learned to accept life as it is…today. Acceptance for me is not being happy that my spouse can no longer work in a public job or that I am glad that I have total control of our finances, how things get done, when they get done, or if they get done.  I am not happy that Lynn cannot walk, that he cannot feed himself,

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Commitment

I’m starting my “staycation” today. You know the kind; where you vacation at home so you can get things done that you never have time to do when you’re working. We normally vacation at the beach each year with our children but when the time came this year to pay off the rental, we realized that though we had some good times when we were there, for Lynn, most of the experience was exchanging one bedroom view for another with a lot of recovery time thrown in without access to all his special needs supplies (though it felt like I packed the house each time we went.) We decided the work involved in going and having to work around his special needs while there would not be offset enough by the

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Can You Come Here a Minute?

“Can you come here a minute?” I hear that every 30-60 minutes all day long and you know what?  It’s never a minute. When I enter his room to find out what he needs, I’m typically gone for 15-30 minutes. Being the chief cook, laundress, banker, shopper, mechanic, fixer-upper, and caregiver; as well as spouse, Mom, grandma, and employee, my days are filled to overflowing. The only time I sit down is to eat and when I do, I’m usually composing a shopping list, taking care of bills, or completing assignments for work OR I’m feeding Lynn as I take a few bites as well. Most of my days are 19 straight hours of go, go, go; so in order to manage my life I have to be relatively organized. “Organized?”

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Finding the Will to Live

Let me start by saying that I’m not a psychiatrist nor a licensed counselor so what I mean is based on my own experiences in talking to others with disabilities, my own experience with family members, and my personal beliefs. Therefore, you may or may not agree with me, and that’s fine because this is a very delicate topic and one which creates a lot of emotion in people. When a person has a chronic health condition that cannot be cured, depression is prevalent. When the disease also affects the neurological center of the brain, the likelihood of depression is even more significant since the natural chemical reactions that would typically help the person stay balanced may be impaired. Therefore, for people with secondary or progressive MS, depression is common and often a

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Stages of Grief: Anger

When you first suspect your loved one has MS, you tend to find ways to deny it. Lynn kept saying his doctor had ruled it out. I kept saying, “Are you sure you’re telling him everything?” When he said, “Yes,” I would accept that as true because I wanted it to be true…denial. Then, the day came when all the tests were back, and there was no denying the fact he had MS. By that point, he had significant symptoms he had denied, which I no longer could. By late into the evening hours, he was doubled over, unable to stand upright. He would fall easily; drop things. He was too exhausted to eat, and he loved to cook and eat. We would go to the beach for him to

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Independence Battles Protection

One of the greatest struggles I have found in being a caregiver is finding the happy compromise of my husband’s need for independence and control of his life versus my need to control his environment and keep him safe and healthy. Many times these two needs seem to be in direct conflict with each other. Here’s why I think. Him: Lynn was in his 40’s when he was diagnosed with MS. He was married, had a child, a successful career that was very physical, he played in a band, sang, and was a strong man of faith. MS came along, and suddenly, he was vulnerable. No longer did he have the stamina to work all day and go to band or choir practice at night. No longer could the go to trade shows and

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Helping Him Get Comfortable in Bed

One of the most difficult aspects of caring for someone who has limited movement is getting them comfortable in bed; at least it is for me.  When I lie down at night, I know it takes a few moves here and there just to find that right position of comfort that allows me to settle in to sleep—that sweet spot.  However, when you are responsible for helping someone else find their “sweet spot,” you don’t have the benefit of “feeling” for just that right point of pressure and relaxation; so how do you help them get comfortable?  Here are some things I do to help Lynn be as comfortable as possible in bed. I use lots and lots of pillows to help me position him. He has gastric reflux so

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Dealing with Loss

During my nursing training, I was introduced to Dr. Elizabeth Kubler-Ross’ five stages of grief and loss related to helping patients and their families as they experienced dying and the loss of a loved one. Since that time, I’ve come to realize that those five stages of grief are not exclusive to death and dying. We experience the same emotions whenever there is a significant loss, including the loss of what “should” be. I would suggest that most of us think of our life span in stages: Stage 1 Preparation for Life:  Being born, the preschool years, completing K-12, college or career training Stage 2 The Productive Years:  Finding a mate, starting a career, having a family, settling into a pattern of living. Stage 3 The Plateau Years:  Instead of struggling

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Home Alone

If I’m going to be away from home for any length of time, I try to arrange for someone to stay with Lynn for most of the time that I am away. I sometimes have to leave before the person staying with him can get there or they have to leave before I can get back. That was the case this week. I had to go into work. The person staying with Lynn was coming at 11:00 and leaving at 2 so I knew he would be home alone for at least an hour and a half since the meeting I was attending ended at 2. When I left at 11, my “back up” was not here yet. Therefore, rather than just turning over his care to someone, I had

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Watching, Waiting, Being Strong

It’s funny how words or pictures will bring back such vivid memories. The Cultural Arts Department at work sponsored a poetry/prose writing contest recently with the theme, “Rhythm.”  I don’t usually enter such contests but when I thought about the theme, it brought back memories of standing next to Lynn’s bed while he was in the ICU about three or four years ago. That year was terrible. Just after Thanksgiving, Lynn was admitted to the ICU due to a urinary tract infection gone wild. He had been using an external collection device instead of an internal intermittent catheter thinking it was less likely to cause infections.  Well, he got one anyway.  He saw his urologist who confirmed the diagnosis and gave him antibiotics.  It didn’t help.  The urologist took a

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Pathway to Power (Chair)

As Lynn’s multiple sclerosis has progressed over the years, we have gone though many different mobility assistive devices. Each has been a tremendous help but at each stage along the way, Lynn has resisted using them. Looking back, I wonder if he knew then what he knows now would it have made a difference? For example, Lynn obviously had MS long before he was diagnosed with it. By the time he had an official diagnosis, he was having frequent falls, extreme fatigue, and difficulty standing upright. He grilled every night, rain or shine. To make it from the deck to the bedroom where he would watch television, he had to hold onto the hallway walls the entire distance. We have a dark smudge the width of his hand print all

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Standing Beside His Bed

Introduction:  I wrote the following story about a time in my life when I was waiting at Lynn’s bedside to find out if he was getting better or worse.  I submitted this story to a writing contest at work and won second place. However, I wanted to share it with you because I think many of you can relate to it. Standing Beside His Bed Standing beside his bed, watching the rhythm of his breathing, the irregular up and down motion of his chest, I think of where we have been and where we may be heading. Watching and waiting for that next breath. Listening to the rumbling of secretions he cannot clear on his own, it is strange being on this side of health care.  For years I was

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Connecting with Grandchildren

Lynn loves children.  He gets such a kick out of watching them play and run around.  Some of his favorite commercials are those that have little children running around getting into things and acting adorable. When my daughter (his step-daughter) announced she was pregnant, he was happy for her and her husband, but didn’t melt into a heap of sweet, gooey, sentiment…that is, until the baby was born.  The first time that soft, tiny, helpless little boy was lain on his Paw Paw’s chest, Paw Paw was addicted to grandparenthood. When Eli, our grandson, was a little baby, Lynn could interact with him by me holding the baby on Lynn’s lap and turning the pages of a book as Lynn read to him.  Eli loved to have anyone read to

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Spring Into Action

Are you prepared to spring into action for an emergency? Just because you are a full time caregiver, doesn’t mean the world stops sending you other challenges so you can focus on the one needing your care.  Most of us have other family members—children, parents, siblings, even close friends or others who are near and dear to our hearts.  What happens when they have a crisis and they need you? It’s a good idea to have a plan in place for just such an emergency. Last weekend, my Mom seemed to be having a stroke.  Suddenly, she could not say what she wanted to say but instead a weird combination of words came out.  She was fully alert and aware that her words were garbled but unable to get what

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I’m Thankful to God That Jesus Didn’t Quit

My daughter writes each day about something she is thankful for that day. I was so touched by the following post she had on Facebook last night, that I just have to share it with you.   By Sarah Johnson Today I’m thankful to God that Jesus didn’t quit. Imagine. You’re in the desert. It’s hot. Like, really hot. You’re exhausted. You’ve been chained up and beaten. Not only with fists, but whips, chains. Every inch of you hurts. You have open wounds all over your body. Your sweat, your salty sweat is rolling into those open wounds. Stinging like tiny needles being dragged along your skin. You can’t wipe it away. Your feet are raw from walking, every pebble or hunk of dirt they scrape against as you step

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Frustrations of Dealing with Limitations

Life at our house over the past month has been rather challenging.  My Mom was just diagnosed with ovarian cancer and lives about two-hundred miles away; so we have moved her and my Dad in with us while she goes through chemotherapy.  Lynn’s Mom has myasthenia gravis and suffers from extreme weakness all the time. She fell while home alone and got pretty banged up though fortunately no broken bones. His Step-Dad was diagnosed this week with lung cancer and has maybe six months to live…and it’s the holiday season. As the primary caregiver for Lynn, not only do I deal with his physical health but his mental andemotional health as well.  All this bad news has been very difficult for him.  He is angry because he wants to help

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Letting Go of Unrealistic Plans

Lynn and I had to make a very difficult decision this week– whether to cancel our summer vacation or to go as planned.  Now, on the surface that might not sound like such a big deal, but it was.  Since the children were small, we have been going to the beach in North Carolina for a week during the summer.  It’s the only type of vacation we take all year. Now that the children are grown with families of their own, we still invite them as our guests to spend the week with us at the beach.  It’s a great way to reconnect and create memories to look back on during the cold winter months.  Over the past two years we have also included both my parents and Lynn’s mom

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The Many Faces of Care

As a caregiver, I understand that my role involves providing a lot of physical care.  For any caregiver, how much care is provided depends a lot on how significant are the limitations of the one for whom you’re caring. For me, the physical demands are many because Lynn’s physical limitations are many. But, in addition to providing his physical care, I also need to provide mental, emotional, spiritual, and social care.  The physical care is pretty consistent in that I know in advance what I’m going to need to do for him and how to do it; however those other “care” needs are more unpredictable. Mental and Emotional Care We’re pretty lucky in that so far Lynn’s MS has not affected him mentally in any significant way.  He has had

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Stages of Caregiving

I have not always been a full time caregiver.  As I look back over Lynn’s journey through the maze of MS progression, I have had different roles along the way. On the Outside Looking In Role For several years before he was diagnosed with MS, I watched his symptoms develop from afar. He would mention an occasional problem with foot drop or weakness in his leg. I would recommend he see a doctor but he assured me it was “just the heat” or “sciatica from sitting on his wallet.” Knowing his father had MS, I would suggest he see a neurologist and he would always say his doctor had ruled that out as a possibility. It was evident that the suggestion of possible MS was not an acceptable one and that

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Caregiving From a Different Perspective

Each of us filters information through our previous life experiences. Through those filters, we evaluate comments made and inferences perceived and eventually make conclusions based on those filters. We also tell ourselves stories about what we see and hear based on those filters and it’s through those stories that our emotions are generated. That being said, each of us will read a blog and get something different out of it. We will pass judgment on the writer and the content based on where we are in life and what we believe to be true at that moment. As I have been writing my columns, I have had a growing concern that what I share may be misinterpreted or may even cause pain to readers who take in what I share from

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My Mom's Words are Still True Today

  Sixty-two years ago today, my Mom and Dad became husband and wife.  Two months later he was drafted into the army and served the next two years in Korea. As I listen to the words this young bride wrote so long ago, I look at them now and see that the love they had then is just as fresh today. My Mom was recently diagnosed with stage III ovarian cancer.  She and Dad are staying me while she receives treatment for this life threatening condition. Though Mom’s attitude throughout this ordeal has been remarkable, Dad has been just as amazing. Though he is 82-years old and from that generation where men did men’s work and women did women’s work, he is the perfect caregiver for Mom.  He stays right by

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Am I Competent to Do This Job?

I earn a living by working in a hospital in the department of Human Resources.  Hospitals are heavily regulated and one of the most stringent agencies who monitor us is The Joint Commission. One of the standards they have for human resources is that it’s our responsibility to determine if the people we hire are competent enough to safely do their jobs. I won’t bore you with the details on how that’s done but in working on a project related to competency determination today, I thought about what competencies are required to be a family caregiver.  It’s not an easy job but for some reason insurance carriers and the government seems to believe that any family member should be able to be a caregiver. Just before my father-in-law died last

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Take Care of Myself?

While I know people are well meaning, when they remind me to “take care of yourself,” I honestly want to ask them, “Now, how do you suppose I do that?” People who have never been full timecaregivers while jointly being a full time employee and at the same time being responsible for the food, shelter, transportation, maintenance, solving problems, researching issues, managing medical care, providing entertainment, comfort, and encouragement….have no idea what they are talking about. I was sharing this week with a colleague how overwhelmed I was over Christmas with my father-in-law dying, helping my mother-in-law find hospice and companion care for him, helping her maneuver through insurance changes, keeping a watchful eye over my Mom who has chemo every three weeks and was admitted to the hospital for

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Character Flaws

I have a tendency to feel sorry for myself at times.  I also know that I may at times play the martyr.  What I didn’t realize is that I sometimes threat others the way I don’t like them to treat me, too. Feeling Sorry for Myself When others are able to go out, make plans that they can actually carry out, sit quietly and read or watch a TV show without interruption, I feel jealous.  I can hear the smallest violin in the world playing, “Poor Pitiful Me,” while I sit and think about how unfair it is that I can’t do those things. I look on with envy at those who can eat while their food is still warm or who can go to bed before 2:00 a.m. when

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Giving the Gift of Receiving

“Giving the gift of receiving,” sounds like a contradiction.  How can you give a gift that you receive? I think you can and I think it can be the greatest gift you give and receive all year.  Here’s why. As a caregiver for someone who is totally disabled with very limited abilities, my world is very structured and organized.  It has to be in order to keep Lynn healthy, to meet all his abundant needs, and in order to get all those things done that must be done by the end of each day. Because I must be so organized, changing my schedule or having someone come in to “help” me is often very disruptive.  I know they are well meaning and I know they truly want to help; I

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Planning for the Future with Our Children

Sometimes I forget the impact our life has on the rest of our family. Today, that impact is more evident as I wait for our three children and their spouses to come over to “talk about the future.”   I have been having just such a conversation with my brothers and parents but hadn’t really thought much about needing to have that conversation with my own children.  However, they have requested an opportunity to discuss the “what ifs” that can occur either as a result of my disability or my death. As a result of secondary progressive MS, Lynn can no longer provide any self-care.  He relies on me for everything from feeding to assistance with going to the bathroom.  It’s a lot of work but we have a routine that

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