multiple sclerosis

Standing Beside His Bed

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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 on the other side; the one checking the vital signs, assessing the patient for changes indicating improvement or decline.  For years, I was in control.  Now, I’m on the other side…waiting…watching…hoping…alone in his room; his strength when he has none.
I learned about multiple sclerosis in nursing school years ago, but the overview in the textbook in no way prepared me for the reality.  Before, his MS became so progressive, the rhythm of our lives was moving along, flowing with the usual ups and downs, sometimes riding high on a wave of happiness but often feeling the plummet as the wave crashed down again and new symptoms emerged.  Up and down like the ocean currents; in and out, requiring us to develop a new “normal” to the rhythm of our lives.

What is a normal rhythm anyway?  For us, it’s taking each day as it comes, each moment as a blessing of time God has granted us to be together and with our family. As the ebb and flow of the disease takes control of our lives, we adjust to a new normal; a new way of adapting; a new rhythm of life.

Standing here I pray for strength and mercy. I pray for wisdom for his healthcare team.  I pray that they will not see him as a diagnosis but as a person with his own needs, his own hopes and dreams.  I appreciate them letting me be part of his healthcare team; for them allowing me to be his advocate and for them listening to me … because I know him best.  I know the subtle changes; I recognize a difference in rhythm or color or sound that mean improvement or decline.
And I continue to wait and watch.

The doctors, nurses, therapist, and so many more come and go.  They warn me the next thirty minutes will decide; does he go on a respirator or is he stabilizing.  If he goes on the respirator, he may never come off; his lungs are just too weak. So I wait…and watch…and pray.

Do I notice a change?  Is the rhythm of his breathing less erratic, somehow less labored?

The medical team comes in and draws yet another tube of blood.  They come back smiling, “It worked. His gases have improved.  Let’s see if he continues on this path. Maybe we can avoid the ventilator after all.”

I say a prayer of thanksgiving.  My fear that this was the beginning of the end or the beginning of a lifetime on a ventilator is fading away.  The rhythm of my heartbeat slows to match the rhythm of his breathing and once again, the normal of our lives change and we move on to the rhythm of a new normal in living with this life sentence of MS.

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Spring Into Action

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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 was thought in her head to come out of her mouth. Thought there were no other symptoms of a stroke, dysphasia is a potential sign of stroke and one that should not be ignored so I needed to get her to the emergency room.

It’s important in times of crisis, to be able to sit aside as much emotion as possible so that fear and anxiety does not prohibit you from reacting.  Having originally been trained as a nurse, I had experience is becoming “clinical,” that is you start assessing major bodily functions, determine what is working and what is not and then plan quickly to take whatever necessary steps come next. Living in rural Virginia, our rescue squad is volunteer and doesn’t always have a team at the station plus the rule in an emergency is to take the patient to the nearest emergency room.  I wanted her to go where her medical records were located if possible and since there was no breathing concern and other vital signs were stable, I realized the quickest way to get her there was to take her myself.

Unfortunately, taking Lynn with us was out of the question.  I could not manage to care for him and my Mom at the same time so as I was having Dad help Mom get ready to go to the hospital, I immediately put an indwelling catheter into Lynn so that someone else in my family could stay with him.  Then I called his son, to come spend the night just in case but he lived an hour away; so I called my daughter who only lives 10 minutes away and she came right over.  She finished helping my parents get ready while I pulled together Lynn’s essentials—catheter (done), night time medications(assembled and labeled), morning medications (assembled and labeled), instructions for other comfort needs (written and placed on kitchen table.)  Checked and double-checked.  Lynn had or was about to have all he needed for me to leave immediately and stay away several hours.

My family has learned that when I call for help, it usually means I need to be relieved of Lynn’s care for an extended time. They have made a commitment to do what they can to always be there for us and having the knowledge of that commitment gives me such peace knowing that they have my back where he is concerned. I have an emergency folder prepared in case something happened to me and I can’t do the prep work for when I’m not here.  It’s good to have that available and to update it periodically since care for anyone with a long term condition can change over time.
continue reading at: http://multiplesclerosis.net/living-with-ms/spring-into-action/

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Frustrations of Dealing with Limitations

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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 but is limited in what he can do.  For example, we had bought his Mom an emergency alarm button to wear but she was intimidated by how to set it up and therefore, it was not working when she fell. Lynn had tried to explain to her what she needed to do to start the service but she just shuts down when it comes to technical discussions. Therefore, he felt he needed to go to her house to make sure the system was functioning.  We climbed into the van and, of course, when we get there, his wheelchair couldn’t go inside. (I strongly suspected it couldn’t before we went.)  He was convinced that with the small metal ramps we have, he could get in. I could tell his need to make sure she was safe was over-riding his knowledge of logistics; so we went and I went inside to hook everything up while he waited in the van. His Mom couldn’t come out to see him so I became the liaison between them and made sure his need to see her safe was satisfied.

Now his Step-Dad is dying. His Step-Dad didn’t enter the picture until Lynn was an adult so it’s not the same impact as when his own Dad died with MS when Lynn was twenty but still, he’s known Ben for about thirty years and he is special to Lynn.  Tomorrow, we plan to load up and go to the hospital to see him to essentially say good-bye because we try to avoid hospitals as much as possible during cold and flu season to keep Lynn healthy, I’m nervous about going.  To visit face-to-face versus calling is a choice I allowed Lynn to make because, again, he needs the opportunity to satisfy his emotional needs as well as his physical.

Lynn has really become depressed with all the health challenges affecting our family.  He’s a tender hearted man and though he has great faith and knows each of them knows Jesus and will have a home in heaven, the grief he is feeling over their suffering and uncertain future is difficult for him because he has no control.  He’s trying to control his emotions and not add more to my load but I hear him getting angry and frustrated at minor things as he seeks to write on his book.  He’s sleeping a lot; he doesn’t feel well; he has no patience; and he’s making poor decisions regarding his own health (staying up till 6:00 a.m. while I take my Mom to the emergency room instead of going to bed and getting the rest he needs).  I’m trying to help him cope through humor and helping him find solutions that work for the both of us but I have to admit, my patience is at a limit, too.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-the-frustrations-of-dealing-with-limitations/

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Letting Go of Unrealistic Plans

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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 (all in or near their 80’s).  Both of us love the beach and the family time and we had traditions of fishing trips, play time in the pool, and lots of grilling outside.  However, Lynn’s secondary progressive MS has changed all that.
Trips to the beach over the past ten years have been difficult for Lynn.  He doesn’t tolerate heat well so we tried a cool vest – didn’t work, and we tried early morning fishing –took too long to get him ready to go so by the time we got there, it was already starting to heat up.  We rigged ways for him to hold his rod to fish but though he could hold it for a few minutes, his spasticity prevented him from having a good grip or being able to reel in anything that might nibble at his bait so it really took the joy out of fishing.  Plus there was the issue of needing to intermittently cath him every hour or so…  The result was—no fishing. For a couple of years we took fishing gear just in case but last year we didn’t even do that.
We tried borrowing a floating wheelchair so Lynn could get into the ocean.  That was fun… for about the first five minutes.  It took three of us to stabilize the chair in when the surf rolled in so he wouldn’t flip over.  He and the rest of us got beat to death by fighting the waves so we tried just sitting him on the beach.  (Don’t worry; he had a life jacket on.) He, of course, could not get away from unexpectedly higher waves so he got whipped by that process too; not to mention the fun of trying to lift him from the ground up to a floating wheelchair as the sand shifted out from under us every few seconds.  We decided not to do that again.
Last year we found a really nice house that was handicap accessible.  I was so excited.  It thought, “This is it! The solution to our vacation woes”. It had ramps, an elevator, a roll in shower, handrails on the wall, and most importantly a ramp into a pool.  It seemed like the perfect solution except the room designed for the disabled person to use was the smallest room in the house and was filled with furniture.  As any of you know who have traveled with someone disabled, lots of equipment and supplies are necessary for ongoing care.  Therefore, this room just didn’t meet our needs.  We tried re-arranging the furniture so he could get his power chair in and out easier but we were warned not to do that again next year.  We also thought about using the larger downstairs bedroom but were told we could not do that either because his wheelchair would damage the carpet.  Okay, all the added restrictions and challenges were starting to make the place less desirable; then, I found out we could not have a late check out this year.  That was the straw that broke this camel’s back.  It takes three hours to get Lynn ready for the day.  With a 10 a.m. checkout, that meant a 7:00 a.m. get up time if we did nothing but get him ready to go but when checking out, you have to do the packing, straightening up, throwing away food, etc. which takes at least 2 if not three hours when you have 7 people using the house.  And while they all pitched in to take care of their own things, I still had all our packaging and packing to do to get us out the door because everyone else was busy with their own. With a five hour drive home, getting up six hours before 10 was just too much for me to accept.
So we are canceling our vacation.
Continue reading at http://multiplesclerosis.net/blog/caregiver-perspective-letting-go-of-unrealistic-plans/

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The Many Faces of Care

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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 periods of depression and is in fact, on an anti-depressant to address that problem.  When he first became depressed, I didn’t catch on right away to what was happening.  I expected him to be down; after all, he had gone from being a very physically active independent person to someone totally dependent on others to provide for his every need. He had a right to feel frustrated, angry, discouraged, afraid, sad, and any number of other emotions.  Plus, he just felt bad. Since he had so many legitimate emotions that were healthy and normal for anyone going through what he had to endure, I didn’t catch on to the fact that his level of depression was growing deeper and deeper. When I did finally catch on was when he started making statements such as, “Why bother (to exercise); it’s pointless anyway.”  “What am I any good for anyway?  All I am is a burden.” He also stopped eating, stopped being interested in any decision making and seemed totally disengage from his life. Suddenly, I had that “ah, ha” moment and got in touch with his healthcare provider to get medication to help.  Fortunately, it did.  For the most part now, he manages depression pretty well and doesn’t go into long periods of being down, but it’s something I look for all the time.
In addition to depression, he has a little forgetfulness but he’s lucky; he doesn’t really experience the memory issues that many with MS battle every day.  He occasionally needs a reminder but most of the time the memories come back with a little prompting.
Spiritual Care
I believe that we are spiritual beings.  I know that, for Lynn and me, we count a lot on God for meetings our needs.  We look to our Lord and Savior to carry us through a crisis and to look out for our needs.  Our spiritual side is what keeps us going, what provides our comfort, and is often what restores our hope. Therefore, it is essential that I factor in that he needs spiritual care as well as physical care.  When there are no viruses or other contagious bugs in the air, he goes to church; however, during the winter months, that’s too risky…too much flu and other nasty bugs to be shared.  Therefore, it takes more effort to maintain the spiritual side of life.  Lynn has CDs that he listens to which bring God’s word to his mind and helps him stay connected to his faith.  In addition, he listens on line to the actual sermon presented at our church.  We also have many discussions about our interpretations of God’s word and how Jesus’ teachings affect our lives. It’s a very important part of his care to help him meet his spiritual needs and is why I feel he has been able to avoid greater bouts of depression.
Continue reading at: http://multiplesclerosis.net/caregiver/many-faces-of-care/

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Stages of Caregiving

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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 I should keep my opinions on that subject to myself.
The Interferer Role
Gradually, the symptoms occurred more frequently and in more areas of his body.  I watched and could no longer stay silent and insisted that I start attending his medical appointments so I could understand what was happening too.  He didn’t want me to come but after a heated debate, he gave in.  He shot daggers in my direction when the doctor asked him how he was doing and I piped up to contradict his, “just fine,” to say he was not fine but was having trouble etc., etc., etc.  My interference lead to a referral to a neurologist, testing for MS and finally, the dreaded diagnosis.
The Researcher Role
Still unwilling to talk about MS, Lynn needed information; however, he was afraid that if he learned what to expect, he would develop all the symptoms he heard about and would become an invalid like his Dad. Where I picked up all the handouts available in the doctor’s office and promptly started an internet search, he removed the materials from his sight and had me shut down the websites if he caught me reading them.  He didn’t want to hear anything I read and absolutely did not want to discuss it…but, he needed information.  I learned to just wait.  He eventually asked a question here and there and soon I would happen upon him reading an article on the web. I implemented some of the things I read; asked questions about others at the doctor’s office and eventually helped him obtain the information he needed in the way he needed to receive it.
 
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-stages-caregiving/

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Caregiving From a Different Perspective

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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 the point of view of someone who has MS. When I share my “story,” it’s from the point of view of the person who cares for the person with MS. Essentially, I have MS by association. I do not have the muscle weakness, the spasticity, the loss of functioning, but I have equal impact as my husband’s full timecaregiver. I do not for a minute think I have it worse than he does. I could walk away from this situation (though I choose not to), but he cannot. My image of myself, my career choices, my plans for the future are not made based on my own limitations but every choice I make, I make with his limitations in mind.
I pledged to Lynn before God and our families that I would love and care for him in sickness and in health. I meant it. I never considered leaving when his condition deteriorated to the point it is now. I want to take care of him and I put his needs first in everything I do. I feel it is a privilege to be able to give myself over to the care of my husband whom I know would do the same if he could for me. However, that being said, this life is not easy. It’s incredibly difficult. I, alone, am responsible for ALL his needs. He only has use of his mind and his left hand and arm (and that’s before lunch each day; by lunch time, he can’t use them anymore either). I have people who come in and help me for a few hours during the day so I can continue to work full time from home. However, they do not provide for any of his physical care other than to feed him. Don’t get me wrong. What they do for him saves me a lot of time and allows me to focus on work during normal work hours rather than late at night; however, if there is a problem, I still take care of the fix.
Though, I have pledged to care for Lynn and do so willingly, I get frustrated. I get angry. I get depressed and overwhelmed when he feels bad and demands more attention that I have the energy to give.  When he asks me to adjust his inflatable cushion so that his bottom doesn’t hurt, he expects me to know, I guess by instinct, whether to add more air or take more away. He can’t tell me what to do. He looks to me to figure out everything he needs and while I understand that after he’s sit for a long time on a cushion till his bottom is either numb or painful and he can’t “feel” it anymore, it’s frustrating to be called away from cooking or from participating in a conference call while working so that I can provide a fix that I don’t know exactly how to provide. I am very adept now at cathing him while discussing highly sensitive issues during a conference call and balancing the phone with my head while I use my hands to do a sterile insertion. I often have food cooking on the stove, while I’m scratching an itch somewhere on his body and formalizing a response to an issue to give when I can get back to my email. I get angry when he sits there watching TV while I administer to his care, I finish up to leave with my arms full of supplies, and he says, “Oh, before you go I need…” I get depressed when I ache all over because I’m coming down with something, I’ve had 4 ½ hours of sleep, and still have several jobs to do and all I want to do is lie down and rest but I can’t. I get depressed when everyone from work gets to go to conferences or gets “atta boys” for what they do and I don’t because I have to stay home, out of sight/out of mind, and I feel unappreciated. I admit, I do a lot of “poor pitiful me” self-talk before I even realize what I’m doing which is unhealthy.
continue reading at: http://multiplesclerosis.net/living-with-ms/different-perspective-caregiving/

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Am I Competent to Do This Job?

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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 month, I was attempting to assist my mother-in-law in finding someone who could take care of him if he was discharged to hospice care.  We discovered that once a person is deemed not to be able to improve but instead just needs comfort care or maintenance care that Medicare and insurance companies no longer pay for help regardless of the health and well-being of the family member responsible for his care.  My mother-in-law is near 80 and has myasthenia gravis, a neurological condition that makes all her muscles very weak.  She cannot lift or move anything more than a few pounds in weight.  There was no way that she could provide care for her spouse; however, that factor was not considered by insurance and she was unable to get any type of financial assistance to bring someone in to care for him or to place him in a skilled care facility.  Why? Because insurance said he did not need skilled care; just palliative care.
I’ve found the same is true for someone who is totally disabled and cannot improve their health, like Lynn.  His MS has progressed to secondary progressive and he can do nothing physical for himself; not even scratch an itch. He is an author and writes manuscripts with the use of a verbal command program that writes what he dictates.  It’s slow going but it keeps him productive and fortunately, so far his memory has not been affected by the disease.  With Lynn needing total care and my needing to work full time to pay the bills, I looked for help that we could afford.  I now pay an individual to work six hours a day 2-3 days a week to assist him with typing, feed him, and make sure he has liquids to drink. I provide all the rest of his care.  Am I competent to truly care for him? What type of competencies do I need to keep him safe and healthy? If someone was to apply for my job, what would my job description as a care giver look like?
Caregiver Job Description
continue reading at: http://multiplesclerosis.net/living-with-ms/caregivers-perspective-competent-job/

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Take Care of Myself?

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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 fainting spells, doing Christmas activities (mainly as a respite from medical issues) and helping Lynn who was depressed over his step-dad’s impending death and who was bummed out because he could not help me with it all.  Now, don’t you think that list of “to do’s” is a little overwhelming?  Well, at the same time, one of my four employees who handled a unique function for my team resigned, I had to start recruiting for her position, a consultant was coming in to our department who needed information, and various other challenges were being thrown my way that were work related. That’s a lot of stuff to juggle in 24-hours. My usual amount of sleep was 4-5 hours a night; so I was running on empty and admittedly using caffeine pills just to keep going. …and she tells me to “take care of yourself.” …Really??  What is she expecting—for me to eat healthy, exercise regularly and get plenty of sleep?
I wonder what people think sometimes when I tell them about my life.  Do they think that I can just call up the local “help” agency and have a fully trained, caring individual come help me out so I can take a nap?  Do they think I can just say, “Lynn, see you in a few hours.  I’m off to the gym,” or that I can choose to go to bed earlier and sleep later because all that stuff I’m doing is not essential?  I guess, they think I can just say, “No.”  However, “no,” is not an option.  Have you seen that commercial where the Mom or Dad is feeling lousy with a cold and comes into the baby’s room to say, “I’m feeling sick. I won’t be in tomorrow.”? That commercial gets attention because any parent knows you can’t just tell your child you’re taking the next day off and leave them to their own devices.  Well, that’s true too for caregivers. The only difference is that when you’re a full time caregiver, there is never a “next day” when the illness has passed and life goes back to normal because our normal is high demand, adjusting to constant change, and often feeling exhausted and achy all the time due to lack of sleep and muscle strain.
Continue reading at: http://multiplesclerosis.net/living-with-ms/take-care-of-myself/

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Character Flaws

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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 I’m still up preparing dinner or feeding Lynn.  I want those options too and I sometimes resent not being able to be like everyone else.
Then, I look at Lynn who can’t walk, can’t feed himself, and is totally reliant on someone else to do for him. I see how sad and guilty he feels when he watches me give up plans or be unable to have fun like others.  I hear him apologize when I’m struggling to stay awake to finish my day or when he has to get me up at night.  I see how his life is so much harder than mine and I’m ashamed of how I feel though I know I’m human and my feelings are natural.
Playing the Martyr
Though I don’t consciously play the martyr, I think somewhere in my subconscious I deny myself the opportunities I mentioned above because I want to be recognized as self-sacrificing.  Could I go to bed sooner?  Maybe, if I let some things “go” or if I did not indulge in distractions like listening to books on tape or reading about my friends on Facebook.  When others offer to stay with Lynn, I’m reluctant to say yes because I don’t want to appear as if I’m neglecting him or I say no because I’m concerned since they don’t know his comfort needs, that he might be uncomfortable while I’m away.  I also feel that as I become more isolated from participating in activities that it’s more and more difficult to bring myself to socialize. I also admit that I like receiving praise for what I do.  I like the compliments and recognition that come with being the self-sacrificing spouse. Yes, I admit it; I have a “sick” personality at times.
Continue reading at: http://multiplesclerosis.net/living-with-ms/character-flaws/

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Giving the Gift of Receiving

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“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 get that, but truthfully, it’s also disruptive even while helpful.  If someone is coming over to help, they typically want to do it first thing in the morning to get it out of the way so they can get on with their day.  I would want to do that as well so I understand why they ask to come over early.  However, in order to receive visitors, I have to make sure that Lynn’s three-hour morning routine is completed before they arrive. So if someone wants to come in “mid-morning” at 9:00 a.m. because he/she is an early riser, then I must get us up at 6:00 a.m. Getting up at 6 doesn’t sound bad except when you realize we can’t get to bed most nights until 2 or 3 a.m.  Therefore, before a visit, we are often getting a “nap” rather than a night’s sleep which compromises not only my well-being but Lynn’s since he battles fatigue.
Another concern for letting people give their help is potential exposure to infections.  When family members or close friends come over, they already know our “rule” for visiting–if you might be sick, don’t come!  That little sniffle might not stop a visitor from spreading holiday cheer but from our perspective, they are bringing in a weapon that threatens Lynn’s safety and welfare.  His immune system is compromised and an innocent, though irritating, cold for most people can put Lynn in bed or even the hospital for weeks. I remind anyone who asks to come over of our house rules, but occasionally they still show up with the sniffles thinking that they just won’t touch him or sneeze/cough in his direction and it will be okay, but what they forget is that the greater spread of their virus and other germs is not the cough or sneeze (though such an action carries the germ a good distance), it is the unwashed hands after such an event that touches something he or I use.  Since I provide all his care, not only do I have to limit his exposure but mine as well so that I won’t be the carrier into his environment or I won’t become sick and unable to care for him. Therefore, though I try to be kind, if someone is sick I often ask them not to stay and help.
Continue reading at: http://multiplesclerosis.net/living-with-ms/giving-gift-receiving/

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Planning for the Future with Our Children

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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 works for us pretty well. However, what if I suddenly could not provide that care? What would happen to Lynn?  And what if the “what if” was not my death but my disability and not only would total care be needed for Lynn but also for me?  The obvious answer to that is that our children would have to figure out what to do with us.  Therefore, I understand and appreciate their desire to have this conversation with us today.
All three of our children are in their late twenties, early thirties. Two of them have just been married two years or less and the other one has been married longer but has a young child with special needs.  All are in those early years of learning to make it on their own and struggling to do so in today’s economy.  I also know that each of them would do anything for us.  They are very good about helping out and they want the very best for us, but realistically, if something happened to me so that I could no longer care for Lynn, there would certainly be an impact on them as well as me.
Financially
With any illness or injury there are mounting bills to pay.  If we were both dead and had outstanding debt that was not paid by life insurance, the bills would go to our heirs. That doesn’t seem fair but if I’m not mistaken, that’s how it is. Therefore, to protect my family, I have bought supplemental life insurance that should be enough between what my company provides and the additional I carry, to pay my last expenses and provide the ability to care for Lynn.  I can keep this insurance as long as I’m employed but I’m also 57 years old now so I may only have that option for another 10 years, if that long.  Hopefully, I’ll be able to afford to carry that as independent coverage afterwards though; so financially, I think they will be okay.
Providing Care
Money is one thing but who is going to be responsible for taking us in?  None of them have houses that would allow Lynn to move in along with all his equipment and supplies.  Therefore, they would either have to move into our house or move Lynn into an assistive living arrangement (or more likely a long term care facility).  I know that none of them want to do that but sometimes there is no choice in the matter.  I have some Long Term Care for me to help pay for a place for me to go but Lynn was in the process of being diagnosed with MS when that option became available with my company so he was turned down for coverage.  Would they be able to afford a long term care option or would someone have to quit their job to stay home to care for him? And, if that happened, could they afford for one of them not to work?
Continue reading at: http://multiplesclerosis.net/living-with-ms/planning-future-children/

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Managing Caregiver Chaos

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For some reason, I have found that when I have a period of peace, quiet, and routine that I can expect a similar period of chaos to arrive in the near future.  Usually the chaos that comes is more than a little disruptive and what makes it chaos is that it comes from multiple directions all at once. For instance, my life is pretty busy with taking care of Lynn and working full time.  However, in the past month, my parents have moved in because my 82 year old Mom was diagnosed with ovarian cancer and needed help when she started chemotherapy;  my mother-in-law was admitted to the hospital for excessive bleeding after a colonoscopy; my father-in-law fell and is in the hospital to rule out any broken bones; my son-in-law was in a wreck and totaled his truck (fortunately no injury); one of my four employees resigned; we received notice of a routine government audit at work that is very time consuming (and of course fell under the duties of the person who resigned two weeks before the notice came in so now it falls to me to figure out what to do); another of my employees may be facing medical problems; Lynn’s assistant who stays with him when I have to go into work can’t help because her husband has been in the ICU and last but not least, it’s Thanksgiving with Christmas right behind.  Talk about chaos!!!
How do I deal with all this chaos?
As a caregiver, one of my “bags of tricks” is the ability to adapt and be flexible; plus I never throw anything away that might be used to “fix” something later.  With that principle in mind, I have a medical supply area and an equipment area of my house to help me address any mishaps to Lynn or to my family members.  Knowing that chemo has multiple side effects many of which result in extreme fatigue and weakness, I’ve set up Mom and Dad’s room with all my discarded support equipment from Lynn’s early days with MS that were geared toward preventing falls and conserving energy.  Also, rather than being her caregiver, I direct Mom’s care and let Dad do the actual hands-on as much as possible.  That practice frees up my time for Lynn and allows Dad to continue to care for Mom.
Most of Lynn’s Mom and Step-Father concerns are taken care of by his sister; however, one of our main concerns for them is if they fall and can’t get help.  His Step-Dad is legally blind now and his Mom has a neurological condition that results in very limited strength so if he falls, she can’t help and if she falls, he would have difficulty determining how to help her as well.  Therefore, we have bought them emergency alert buttons to wear so they will have access to help when no one is around.  By knowing they can get help, Lynn is not as anxious about their welfare or as frustrated in not being able to check on them.  If he’s less anxious, then his demands on me are less as well.
With work heating up and becoming more demanding, I’ll need to go into the office more often.  Therefore, I’m working on identifying other resources to stay with Lynn while I’m away.  Having Mom and Dad here is an unexpected help in that regard in that my brother and his wife are able to come help with Mom and Dad and have offered to stay with Lynn occasionally, as well, if I need to go into the office and Lynn’s assistant is still not available.
My best strategy for dealing with chaos though is “don’t sweat the small stuff.”  I do just enough cooking and cleaning to meet essential needs.  I don’t push myself to attend events that aren’t essential or take on projects that deplete my energy level.  I am giving myself permission to stop work at a decent hour and using paid leave to make up work hours so I can get sufficient sleep to have the energy needed to keep going every day.
Continue reading at: http://multiplesclerosis.net/living-with-ms/managing-caregiver-chaos/
 

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Thankful for MS?

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In as much as we have recently experienced the Thanksgiving season, I was thinking about the impact Multiple Sclerosis has had on our lives and trying to think of reasons why I could be thankful for MS.  What comes to mind first, of course, are all the challenges but if I really focus I can think of several rewards I have received related to this condition. Here are a few.
Our Relationship
Coping with the challenges of MS has made Lynn and me closer.  Before MS, we were two married, independent partners. We each functioned well alone so there were many aspects of our lives that were not shared.  Due to his dependence on me for just about everything, we are truly one now. We share thoughts and fears, good times and bad as a team rather than as two people with their own agendas. It has made us recognize our own unique needs and struggles and we have more respect and admiration for each other as we recognize how each of us sacrifices for the good of the other.
For the People I have Met
In many cases, there is an instant bond when I meet another person who has MS or is a caregiver for someone with MS.  Instantly, I know the challenges faced and perseverance required every day just to get by if they are dealing with this complex condition. Though that understanding, there is a connection that does not exist with those who have not had to face those same experiences. I now have friends I’ve met through blogging that I expect never to meet in person but who share with me their concerns and offer support for mine.  I’ve also met many health professionals who have been awesome and who have offered so much assistance and encouragement to both of us. I am thankful for each of them and the efforts they have made on our behalf.
Continue reading this article at: http://multiplesclerosis.net/living-with-ms/thankful/
 

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Handling Grief

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I attended a webinar today called, “Grief: What Helps When It Hurts” by the Hospice Foundation of America.  I was interested in this presentation because I work with a lot of employees who have lost family members and struggle when they return to work. The focus of the presentation was about grieving the death of a loved one but many of the principles presented also apply to the grief we experience as caregivers.
The effects of grief are vast.  Grief can have a physical, emotional, cognitive, behavioral or spiritual impact. How someone reacts to grief is very individualized and impacted often by their own health, their relationship with the person who experienced the loss, and what they believe is the acceptable way to cope with the loss.  It’s a roller coaster ride that lasts a long time and may come back to hit us in the gut when least expected.  Let me share with you how grief has affected me.
First, let me say that Lynn is very alive and aware.  What I am grieving is not his death or even an anticipation of his immediate death.  What I am grieving is the loss of how he used to be.  I grieve such things as the loss of all the things he did for me, the fact that we could go out and share in activities together, his ability to be independent, and my freedom to have time to myself. I miss his singing, the drama programs we used to do together, the ability to go visit family and friends or even go to a movie.  I grieve the fact that he will never be “able-bodied” again; never able to do what he wants to do when he wants to do it. I grieve the loss of the dreams we had for a new home, travel, and financial security by the time we reached retirement.
The physical side of my grief shows up as constant fatigue, headaches, body aches (though that could be the constant lifting I do for him, too) and irritable bowel syndrome.  I also am overweight due to eating to keep my energy level up and to stay awake because I typically don’t have the option to get more than 5-6 hours of sleep a night.  I occasionally have heart palpitations and swollen ankles. It’s difficult to tell if these issues are related to grief or lack of sleep or excessive physical demands but I suspect they are all intermingled.
Emotionally I have periods of sadness, anger, anxiety, and fear—sometimes separately, sometimes all at once.  I can be feeling sadness immediately after a good experience or anger about being afraid.  Emotions run from subtle to extreme all in the same hour though most of the time, I just feel numb.  I’ve learned to compartmentalize my emotions; to separate them from what is currently happening so I can maintain control.
Cognitively-I can become forgetful.  Lynn tells me things and if it’s not “essential” information, I can’t remember any aspect of the conversation. It’s like I’ve had a black out.  Last week I was assembling his medication for the week and I lost one of his bottles of pills. I knew I had it just moments before but I searched everywhere I could think of to find it…unsuccessfully.  The next day I was sitting at the kitchen table and saw the bottle sitting on the “ice dispenser ledge” on my refrigerator door. That ice dispenser doesn’t even work!  I have no memory of putting it there or seeing it when I was looking for it–total loss of recall.
Continue reading this post at: http://multiplesclerosis.net/living-with-ms/handling-grief/
 

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Thankful to Be a Caregiver

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Being a caregiver is difficult.  It’s a lot of hard work; it’s emotionally trying; it’s downright exhausting…but it is also very rewarding.  I try each day to come up with at least one thing that I have done or used or seen or thought about that I am thankful for and I highlight that on my Facebook timeline.  I admit there are times when it is difficult to find something but when I am struggling to come up with a topic, it also makes me realize just how much I have and how truly blessed I am. Today, I want to share with you why I’m thankful that I’m a caregiver.

  1. I am able to give back

Lynn has done so much for me since we have been married.  He is my #1 cheerleader. When he was able, he kept our house and cars in working order but that was just a task.  He was also the best chef that has ever cooked for me (I really miss that because I don’t like to cook). But more than anything, he was there to share with me in good times and bad times; in fun times and stressful. He gave totally and completely to me and now I can give back—not that I didn’t before, but now it is with focus.

  1. I am able to have some control of this situation

One of the most difficult emotions for me is feeling out of control.  I cope better when I feel like I have some control over what is happening. By being his caregiver, I have the ability to control how well he is cared for; I know what he needs, when he needs it, and he likes it done.  I can decide how to manage situations in the best interest of us both. I don’t have to call someone else and hope they are actually paying attention and really telling me the truth.  I don’t have to worry that he has been ignored or that he is hiding anything from me to spare my feeling—I KNOW what’s going on with him and that knowledge makes my life easier.

  1. I am able to share in the two minutes or less joyful moments

I have a very dry sense of humor and Lynn has a silly one.  Together, we can encounter a situation and between the two of us often one or the other has a slanted view of what’s happening, shares that perspective and we share a good laugh.  Our sense of humor allows us to face the challenges without taking them too seriously and helps to take the edge off the sharpness of our lives.  I enjoy those breaks from the seriousness of life and if I was not taking care of him, I would miss those.

  1. I have been able to share my caregiving experiences with others and been blessed by their feedback

continue reading at: http://multiplesclerosis.net/living-with-ms/thankful-caregiver/

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Is This It? I Thought It Would Be Bigger

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For the past year, I have excitedly looked forward to this year’s beach vacation.  I have dreamed about how awesome it would be, talked about it with anyone who would listen, and looked forward to it like a child looking forward to a Christmas Eve visit from Santa. I was so excited because I thought I had found the perfect place for Lynn to go that would meet all his needs and allow the rest of the family to have a great time. This place sounded perfect.  It had an elevator, roll in shower, mobility assistance devices, wider doors, and a pool that slanted so he could roll into it on a floating wheelchair.  It sounded perfect…
Reality set in when we arrived. The first disappointment was that I misunderstood how high the elevator went in the house. I thought the elevator went to the top because it went to the second floor; however, this house has three floors.  I counted the first living area as the first floor and the entrance floor as the ground floor so when I asked if it went to the second floor, they said it did (and were correct) but I envisioned the third floor as the second floor instead. I was very disappointed because my parents and Lynn’s Mom have difficulty with steps.
Next issue: the elevator.  When we first arrived, I read the sign that said the elevator only held 500 pounds so between Lynn and the power chair no one could ride in the elevator to operate the controls.  He has very little hand strength so operating the elevator on his own would be difficult and frustrating.  I finally found the switch the next day to control the elevator from outside the cab so even though I was disappointed initially, it all worked out.
Then, we went to our room.  It was the smallest room in the entire house and I had more than twice the supplies and luggage needed for a week’s worth of living and caring for him.  Though it had a roll-in shower (a big plus), the actual space in the bathroom was very limited.  Then, when I tried to sit Lynn on the toilet, it was a disaster.  The toilet was sitting so close to the wall that the handrail placed on that wall to assist someone in getting up or down prevented him from being able to sit in the center of the seat.  His spastic arm was not able to be moved beyond the height of the rail and he was sitting in extreme discomfort besides not being safe.  I had to quickly get someone to hold him while I went to get the shower chair for him to sit on. However, the shower chair didn’t have a bucket so it could be used as a toilet chair so I had to improvise by using a lined trashcan–not a good experience.
The bed in the handicap accessible room was a queen size and took up most of the room.  That left very little room to maneuver his power chair so I had to move the bed against the wall to make more space.  The bed was high so it made transfers to and from more difficult.  While there was a TV in the room, it was small and difficult to see from a distance. The bathroom sink was just a sink and no vanity (though there was a good sized medicine chest there).   All and all, very disappointing and not handicap friendly….at least for his handicap.
And that’s my point… “his” handicap. This beach house is actually awesome. It’s big and spacious with lots of amenities, a wonderful pool, and lots of space on the second floor to move around.  I’m sure that if it was used by someone who did not need to share a room, who only used the over-head lift equipment to get in and out of the bed, whose toileting was not done on the actual toilet or who managed it without assistance, the challenges we had with the room would not be an issue.
I complain often that a “handicap accessible” label is a distinctive misrepresentation of most places.  Most of the time it just means handrails or bars attached to the wall in the bathroom.  I’ve never actually been to a place that was really equipped for someone totally mobility challenged.
continue reading at: http://multiplesclerosis.net/living-with-ms/thought-bigger/

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Who Can Afford Respite Care?

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Before I get started on this blog, I want to write a disclaimer:  I’m very tired and having difficulty this week coping so if you are a caregiver; read on—you probably have felt the same way.  If you are someone with MS, maybe you better skip this one.  It’s not meant to cause you guilt or pain but unfortunately, it’s how I’m feeling right now.

So what’s wrong with me today?  I’m tired.  My body aches.  And though it’s 8:30 at night when most people are starting to wind down, I still have many hours to go.  Nothing out of the ordinary going on today; it’s just a regular day, but that’s why I’m feeling down…Not depressed; just down.
Do you ever just feel like you want to run away?  I do.  I want so much to have a couple of days in a row where I only take care of myself.  I really feel like I need to get away but I also know that is not going to happen.  You may be thinking, if you’re a parent of a young child that you are also in the same situation, but unless you have a special needs child that is not likely to leave home, I’m going to challenge you on that view.  When your child is totally dependent on you, they are still small enough that you can lift them fairly easily.  Chances are they weigh less than 50 pounds. The person I’m caring for weighs 195 pounds, is six feet tall, and can’t move a muscle independently. While your child is taking up every spare minute of your day, you know they are going to gain independence, and as they grow and learn, they will become even more independent until eventually they will either leave home or if they stay at home, you can ignore them. You have the “empty nest” to look forward to.
I don’t.
Not trying to be morbid here but my responsibilities are only going to get more demanding; not less. As I grow older and have less strength and more discomfort, his needs will only be getting greater.  Our situation will not get better until one of us dies … and the fact is, I’m just as likely to be the one to go as he is since the life expectancy for a full time caregiver is less than the average population’s of the same age.  I sometimes feel that the only way I’m ever going to get any rest or really be able to rejuvenate is to become hospitalized myself.
I know I should not be complaining like this; I have people come over almost every day to help Lynn with his writing.  Most of them also feed him his breakfast, get him what he wants to drink and help him with small comforts.  However, in order to be able to use their services, I have to get up three hours before they arrive to get him ready for them.  Then once they leave, I have hours of work to do related to his care as well.  Each morning my alarm goes off and Lynn is telling me to get up; he needs to empty is bladder as soon as possible. So I can’t linger in bed and stretch or gradually to wake up anymore.  Then we spend a half hour to an hour in the bathroom where my tired, tight-feeling body lifts him onto and off of the toilet.  Finally, I lay him down to get him off his butt since he sits up to sleep. I want so much to not have to get up each morning; to not spend three hours lifting body parts that are heavy and dead weight; to not feel so exhausted I can hardly move.
But I can’t.
Continue reading at: http://multiplesclerosis.net/living-with-ms/can-afford-respite-care/

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Would Hydrotherapy Be an Option?

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We had the great fortune this year to rent a beach house for our summer vacation that included a handicap accessible pool. The pool was large enough for our entire family to be in it (seven of us) but small enough that by afternoon the water temperature was around bath-water range. While some people might consider that a disadvantage, for Lynn it was just what he needed. Cold water tends to make his spasticity worse. Plus, Lynn is like a cold-blooded animal—he takes on the temperature of his surroundings; therefore, naturally occurring warm water was perfect for him.
Each day, we took Lynn to the pool where he hung out with us for at least an hour. I would put his arms across a buggy-board or water noodle and use that as a floatation device. The float would be in front and I would hold on from behind. While I held him, he used the buoyancy of the water to help him exercise not only his legs but also his arms and torso. It was a complete body work-out which did not result in serious fatigue. It was fun and therapy at the same time. While he exercised, he was able to be part of the family activities and enjoy the time with his two-year old grandson (who would have grown gills if we had stayed there any longer, I’m sure.)
Now that we are home again, Lynn realizes even more the advantages of hydrotherapy. When he saw his chiropractor this week, she commented on how much more flexibility he had than usual. She attributed that to the passive resistance of exercising in the water. Helping him exercise in the water was also easier for me. Though I had to hold onto him and even hold him up at times, the water served as a support system for the weight of his body keeping me from being as fatigued and reducing the stress impact on my own muscles. With that realization, he has begun to explore the possibility of buying an exercise pool.
The prospect of buying and installing a pool has me filled with mixed emotions, however.
The pros

  • Helping Lynn to exercise in a pool would be easier on me that the muscle stress currently occurring as I help hold, lift and otherwise move his limbs. He has very little ability to move either of his legs and can only move independently one of his arms so the effort required by me is greater than the efforts he can make alone.
  • An indoor pool in one of our spare rooms would be much handier than traveling 45-60 minutes to use a handicap accessible, heated pool in a nearby city. It would also take a huge chunk of time out of my day. Not only would I have to be away from work for the period of time he was exercising but all the time required to go to and from the exercise location and time to get him dressed and undressed.
  • Once it was bought and paid for, we would not have monthly membership fees.
  • The exercise would certainly improve his health and well-being and most likely, my own. For me, it would also likely help my arthritis pain and muscle flexibility so it would help us both physically.

The cons

  • Exercising in a pool at home while less time than traveling to one, would add at least an hour to my schedule and maybe more when it already takes three hours to get him settled before I go to work each day now.
  • The cost of installation, house modifications, exercise and safety equipment, and a lift device to get him into and out of the pool without assistance would cost approximately $15,000-$20,000. Not bad for an indoor pool but a lot more money than what we have lying around.
  • I’m sure there would be some kind of maintenance requirements that would add work to my already full day.
  • What if we do all this, and he gets worse or I get to where I can’t put him into the pool? Then we would have spent a ton of money for something we cannot use.

Continue reading at: http://multiplesclerosis.net/living-with-ms/hydrotherapy-option/

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The Importance of Skin Care

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Of all the caregiving responsibilities I do on a daily basis, the one I think that is most important is inspecting and caring for Lynn’s skin.  For most people, if they get a cut or a scratch or other skin irritation, it’s no big deal.  They get a little Neosporin ointment, slap a Band-Aid on it and go about their usual routine.  For someone who spends 20 out of 24 hours sitting in a chair, when I examine his buttock and find a skin tear, it’s definitely an “oh, no!” moment in my life.
Did you know that the skin is the largest organ in the body?  It has many purposes; protects us from nasties crawling into our body, warns of danger, regulates temperature, manages waste, and other things.  For skin to be healthy, diet, hydration, hygiene, and circulation are essential. If any of these are out of balance, the skin is not as able to defend itself.  With someone who has MS, and who spends a great deal of time in one position, Lynn’s greatest risk to skin breakdown is circulatory.  As gravity tends to pool blood into the lowest regions of his body, his greatest risk areas are his buttock and feet.  His buttock because the majority of his body weight is compressing the blood flow to his buttock as he sits and his fee because they are further away from the heart and his muscles in his legs are severely compromised. He uses an electronic peddler to keep his legs moving and circulation flowing better but his feet are secured to peddles with bandages so they will stay in place resulting in potential areas of friction.
His buttock is even more at risk. He sits on an air cushion all day which helps but that doesn’t totally remove the fact that this 195 pound man is putting the majority of that weight onto to a tail bone that has almost no fat on it anymore.  There is very little fat cushion remaining between the bone and skin so as moisture builds from body heat causing sweating,  and as his legs slightly move with the peddling motion or occasional shifting of his weight, friction occurs. If the skin is in good shape, it can withstand the movement and all is well.  If for any reason, his skin is inflamed due to too much pressure in an area, irritation from toileting, or the skin has become mottled then it’s more prone to sloughing or tearing.
If you see irritation or redness that doesn’t get better from just changing positions, that’s a signal to spring into action. Determine what’s causing the problem: too much moisture, not enough, resting on something too hard for too long, diet or hydration needs attention, etc.  If you don’t fix what caused the problem, then the condition will get worse or if you get it better, it will return.
To prevent issues with Lynn’s feet and legs, I use a lot of lotion on dry skin to keep cracks from developing.  I use pads like band aids or the pads you can find in foot care aisles for corns or calluses. I keep his nails cut short enough that the shoes won’t push the toes together and cause a scratch. Since his feet are usually strapped into the peddles of the peddler, I put pads on both heals, on the outer side of both feet just below the little toe, and a waterproof extra-large band aid over the top of his foot.  So far, he has not had any significant foot wounds.
His buttock is another matter.  I’ve been fortunate that I have always been able to get wounds there to heal but it takes a lot of diligence to do that and if I find I can’t see healing (new pink skin rather than enlarging of the area) on my own in two-three days, then I call the doctor.  My first action is to determine if I need more or less moisture to the area.  It’s nearly always less for that area.  Obviously bandaging is more difficult as most bandages are not designed to fit around the buttock area but to work on areas that are straight.  There is also the issue of being able to keep the bandage from getting soiled.  If it does, it needs to be changed so that the wound underneath doesn’t get contaminated. If you are therefore, going to change the bandage often, it’s important to use a non-stick covering.  If you use dry gauze, you’ll need ointment to keep it from sticking so you would not be able to eliminate moisture.  I like to use Telfa or other non-stick gauze pads and secure it with paper tape.  These products keep the new skin from tearing open when the bandage is removed.  If the wound needs something to dry it out and help it heal, I use Silveabsorb gel which usually helps.
If my efforts are not working, I call the doctor for an order.  If you can take a picture of the wound to send that will often help the doctor assess the situation without requiring an office visit, but you need to do a thorough job of telling the doctor what you have.
Here are some pointers on describing the wound:
continue reading at: http://multiplesclerosis.net/living-with-ms/importance-skin-care/

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Preparing for the Week Ahead

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Always be Prepared.  That was the Scout motto when I was a kid and one I’ve taken to heart for survival purposes now that I’m a caregiver. The need to always have a “plan B” keeps me on my toes and planning ahead for the “just in case” life I now live.

Today is Saturday.  So far this morning, I’ve spent the majority of my time cooking large pots of vegetables.  I try to keep several containers of all the essential foods Lynn has to eat each week in the freezer.  By cooking in large quantities, I can work up to the last minute and pull a meal together out of the refrigerator or freezer without needing too much lead time. In fact, I have a freezer in the garage devoted to his food.  I usually cook about 15-20 servings of something at a time and put them in individual sized plastic containers. I then slap on a label of what’s in it and when I cooked it and off it goes to the freezer to be stacked with the others of its kind.  I do the same with my meats. I fill my oven with the meat of choice then create 3-4 ounce servings for use at a later time.  Then for the meal, I pull containers, dump them on a plate, cover in tin foil and wa la, I have a meal to throw into the oven to slowly heat till I’m ready to serve.
I’ve got a similar process for clothing.  Lynn has certain clothing that he prefers to wear. After discovering what styles and fabrics don’t annoy him due to binding here or a twist there, I buy lots of them to have on hand so I only have to wash clothes twice a week.  He doesn’t have much variety but he doesn’t seem bothered by that.  He’s into comfort and I’m into ease of care and together, it works out well for us both.  Therefore, I have a drawer full of gray toe socks (individual warmth for each toe), button V neck ¾ length sleeve baseball-style T-shirts, and stretch base-ball slider shorts that have slight padding on each side which protects his skin as he moves in the wheelchair.  Each part of his wardrobe is specifically designed to accommodate his special needs.
For short trips to the doctor (which is about the only place we go anymore), I have a tote bag that comes along.  Much like the diaper bag Moms carry for their young, I have a bag full of necessities.  I carry enough catheter kits and supplies for the number of times I expect he will need to have his bladder emptied while we are gone. But I also carry two extra of everything, just in case, AND an indwelling catheter insertion kit and catheter in case the car breaks down and I have to use up my spare intermittent catheter supplies. Besides catheter supplies, I carry a spare change of clothes, wipes, and an air pump in case the air cushion he sits on springs a leak. (For longer trip, I actually take an extra air cushion with me.)
Continue reading at: http://multiplesclerosis.net/living-with-ms/preparing-week-ahead/

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Just Because It Can Be Done Doesn't Mean It Should Be

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With much excitement but a little trepidation, Lynn and I returned to church last Sunday.  We had not been able to attend there since he started requiring the use of a wheelchair to get around.  When he first came home from the hospital in 2010, he was too weak for almost a year; then as his strength improved he started using Rebif and just felt too bad.  Finally, he switched to Tecfidera and was strong enough and felt well enough to return to church but then we measured the old elevator and realized he couldn’t get his wheelchair in it and then be able to make the 90o turn to get back out again. So we resigned ourselves to listening to the previous week’s sermon each Sunday morning as our worship participation.  Then our prayers were answered and after several years of planning and fundraising, the church has expanded the building and part of that expansion was a wonderful, large, smooth-running elevator!

Last week was the first week the county had given the church an occupancy permit so the elevator could be used.  We got word on Friday that all was good for us to return on Sunday.  I have to admit; we were nervous.  For one thing, we were not sure about where everything was or how to use it but figured we could work it out when we got there. Second, while Lynn has periodically gone to doctor’s appointments for extended periods, he has not been in a setting where he could not move around, adjust his wheelchair tilt to lie back, or be able to have other comfort measures performed for the period of time he would be in church.  We prepared by limiting his liquid intake that morning while increasing his protein and carrying a smoothie for him to drink as soon as service was over. That seemed to work; no unexpected bathroom trips during the sermon.
Another concern was clothing.  At home he wears layers due to his difficulty in regulating body temperature.  Also, his waistline is impacted by the baclofen pump implant so getting suit pants on was going to be a challenge.  Therefore, we had ordered dress pants designed for people who used wheelchairs.  The butt is “out” on the pants so that the back is a panel that wraps around and snaps into place. It worked perfectly. They were also light weight but heavy enough for when he felt cool.  A pull-over collar shirt completed the outfit.  Since our church members usually do not wear suites, he would fit right in.
Continue reading this post at http://multiplesclerosis.net/living-with-ms/just-can-done-doesnt-mean/

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Life Lessons from Caregiving

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Occasionally I get an email from someone who is a new caregiver asking for advice on how to adjust to this new role they have acquired.  Here are some of the life lessons I’ve learned from caregiving.
I can’t be perfect.
Not that I ever was but I’ve always had the personal philosophy that if I was going to do anything, I wanted to do my best if not be the best.  I didn’t just want to do a good job; I wanted to do a great job.  I did not like failing and so to avoid that negative feeling, anything that I wasn’t naturally good at doing, I would tend not to do. I would engage in only those things where I could be a success. I took that approach to caregiving, too.  I started out wanting to be the perfect wife and caregiver while simultaneously being the exemplary employee in my job.  I was depressed and frustrated and heading down a slippery slope till I broke down one day and Lynn and I discussed what my new reality needed to be. My goal now is to do a good job at everything and exceed where I can, but to recognize I can’t keep up the pace needed to be excellent. That’s hard for me to accept but necessary for survival.
Learn to say, “No.” 
I am a people pleaser.  I usually said “yes” to any request for assistance and I volunteered to help out when someone had a need.  My new reality is that even as much as I want to be part of the drama team at church or sing in the choir, or even attend a support group, Lynn needs someone with him 24/7 and most of my friends and family members need to care for their own families after 5 p.m. or on weekends when those types of activities usually occur.  I frequently see requests to assist with one type of mission activity or another or even I hear that my daughter needs someone to keep her sick child; but I have to say, “No.”  Right now, Lynn’s health and safety have to take priority so I can’t allow myself to over-commit.  I have to set priorities and stick with them or I’ll collapse from exhaustion.
Ask for help. 
continue reading at: http://multiplesclerosis.net/living-with-ms/life-lessons-caregiving/

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Sometimes, Ya Just Have Ta Laugh….

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People have different ways of relieving stress and frustration and as Lynn’s condition progressed from independence to total dependency, I think we have used them all.  Most provide some relief but some work better than others.  For us, the method that works the best is laughter.

Now when I was a kid, I was told that it was not nice to laugh at someone else’s misfortune so when someone would fall or something embarrassing would happen to them, I would feel sympathetic rather than laugh.  For myself, I hated to have any attention called to me so if I had a publicly embarrassing moment I would withdraw and hide hoping no one would notice.  However, Lynn has never taken himself too seriously.  He could make a public faux pas and it would just roll off his back as he laughed about it–an ability that has come in very handy over the years.
I remember the first time I laughed at his misfortune I felt guilty.  Now, however, I try to find the humor in difficult situations and it makes them a lot easier to handle. I can remember a time when he fell in the bathroom after getting out of the shower-butt naked.  He landed between the shower stall and the commode.  He was in the small bathroom; just big enough to put in a shower, commode and sink and not much else.  Here is my 6’husband sprawled out in a rather awkward position at the end of the day when he had no energy left to help himself up.  He could have gotten seriously hurt!  I immediately ran to check on him when I heard him fall and went to work shifting body parts one way and then another trying to gain leverage somewhere so that I could get underneath him to maybe be able to get part of him on the toilet so maybe I could push something else underneath to gain more height.  We worked and we worked and we worked until finally, in exhaustion, I started to laugh.  Looking at him with my hands on my hips, I say, “It’s another fine mess you’ve gotten us into Ollie.”  Then we started talking about “what if” someone saw what we were doing and their reaction.  It just got funnier and funnier as we described what they might “see” or think.  Finally, the tension was released; we had a new idea come from the absurd suggestions we were making; and I finally got him off the floor and onto the toilet where I could move him to the rollator he was using then.
There was another time we laugh about often where “Murray’s Law” was working overtime.  Lynn’s book, Rising Tide, had recently been released and we had been invited to appear on a local public television program to talk about why he took up writing and how we coped with his changing needs associated with having MS.  It was a great opportunity and we were both excited.  Well, it was raining. This was before we had the conversion van and even before he was using a wheelchair (though he used the seat on his rollator like one).  I rolled him out to my Impala, lifted him into the car, in the rain, and off we went more than a little damp for our television appearance.  The studio was an hour away. We left a little early because I was unfamiliar with the area where it was located.  We drove back and forth and back and forth trying to find it (we had no GPS) making us very nervous that we were going to be late.  We finally found it and unloaded, this time in a drizzle.  They rushed us back to the studio where we would be interviewed so we could have a brief rehearsal before the taping.
continue reading at: http://multiplesclerosis.net/living-with-ms/sometimes-ya-just-ta-laugh/

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Lessons Learned From a Short Trip

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I previously published an article (June 26, 2014) entitled, “A Short Trip Back Home.”  In that post I talked about the fact that going away for a weekend took just about the same amount of preparation and packing of equipment as going away for a week. Now, I want to talk about “lessons learned” from that short trip.

I have to say that this trip back home was one of the most miserable we have taken in quite a long time.  Maybe that’s due to the fact that we have not tried a short trip since Lynn became restricted to the use of a wheelchair but I think it just speaks to the complications of taking trips. Why was it so much worse?  There are two possible reasons I think for the difficulty of this trip–the first being that Lynn is being detoxed very slowly for heavy metals. The detox process makes him VERY tired on top of the MS fatigue that is a constant in his life. Needless to say, I couldn’t count on him to help in any way with the process and because he didn’t have the energy to lift a finger, literally, he was more needy than usual and was unable to recover from traveling with just a night’s rest. The second reason was that when we go on vacation, usually, my daughter and son-in-law come over to help me pack up the van. That means I can continue to work on meeting Lynn’s needs while my son-in-law packs everything I have assembled into the van. This time I packed and had Lynn to care for all by myself.
Lessons Learned
Lesson 1:  Take two days off to get ready for the weekend trip instead of one.
I took the day off before the trip to make sure I would have everything ready to go and could get started on time. It’s a five hour trip, I wanted to get at least six hours of sleep before I left, and I wanted to be there no later than 5 p.m. because I wanted my best friend from school to come over to visit for a short time.  I had not seen her in MANY years and we were going to be staying just a mile or two from her home—perfect opportunity to catch up with each other, or so I thought.
Since I had to take his food with me and since I was not going to be home to do my weekend cooking for the coming week, I had to do quite a bit of cooking the day before we left. All this cooking is why I should have taken the extra day.  Between cooking and doing laundry, I wasn’t able to do much packing the night before.
Since I didn’t get to bed before 3 and wanted (needed) at least six hours of sleep to be able to stay awake to drive, I didn’t get up till 9 the next day. Our morning routine takes 3 hours so that brings us to noon.  It’s a 4 hour drive if we have no stops along the way so we maybe we could still make it to the hotel by five???
Lesson 2:  Don’t try to do it all yourself.
I put Lynn to bed to rest before the trip while I started packing. While he’s been detoxing he’s been taking a 1-2 hour nap each morning. I put in an indwelling catheter for the nap and trip and proceeded to pack the van.
As I looked at the magnitude of equipment and supplies that I needed to take, I realized I needed to take out the bench seat in the back of the van.  I managed to remove the bolt securing it to the floor of the van but then I could not figure out how to unlatch the seat from the floor.  There’s some type of safety hook in there that I could not figure out and with my weak arthritic hands, I couldn’t get it to come loose so I had to give up and screw the bolt back into place (many tears and words left best unsaid were involved at this stage) and just pack around it.  By now it’s around 2 p.m. (plus 4 hours for an arrival time past 5…maybe I can reschedule my get-together?)
I get Lynn up after I finish putting all the bags and suitcases in the van. I take care of his comfort needs and then I’m ready to load him into the van. Part of the floor space needed for him to maneuver into his place in the van is taken up by a shower chair and cooler of food. It appeared at first that I would have to unpack them but at last, he shifted back and forth enough to roll into place.  Of course, then I had to crawl around and lock down the wheelchair and all the other items so that nothing would shift during transit and smash us into unconsciousness as we traveled.  I managed several moves that would have made a contortionist proud.  At 3:30, we were finally on our way.
 
continue reading at: http://multiplesclerosis.net/living-with-ms/lessons-learned-short-trip/

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