Ms Journey

Watching, Waiting, Being Strong

/
Caregivers need help finding answers

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 culture the next visit and kept Lynn on the same antibiotic.  This went on for three weeks while he got sicker and sicker; pus coming out each time he urinated.  The urologist said he couldn’t figure it out but if I wanted to call the Epidemiologist, go ahead. So, I did; turns out the urologist didn’t read the culture.  If he had, he would have seen that the bacteria Lynn had was resistant to the antibiotic he was taking. (Another good reason to push back if your care isn’t going the way you think it should.)

Unfortunately, getting the right diagnosis was too little too late.  By the time the infection was showing improvement, Lynn was not eating, extremely weak, and felt so terrible that HE asked me to go to the emergency room (He never wants to see a doctor so this was a big deal).  He told the Emergency Department doctor he couldn’t eat because he felt like he could not swallow.  They thought he might be having an exacerbation.  Into the hospital he went in order to get a nasogastric (NG) tube inserted to feed him.  Shortly after insertion, he coughed the tube up part of the way into his lung as he was receiving a tube feeding and ended up with pneumonia.  The pneumonia lead to septicemia and he ended up in the ICU with a body temperature of 90o; yes, I said 90o. Three long weeks after this admission, he was released home; very weak and still not feeling very well.

Three months later, we were back again when he just couldn’t stay awake. I had been saying for a few weeks that I thought he had sleep apnea pretty bad so he saw a sleep specialist and was put on CPAP and then advanced to BPAP. His lungs were retaining large levels of carbon dioxide even with the respiratory support. The respiratory therapist who knew him from a prior admission, let me know that his lung capacity was significantly less.  As his CO2 levels continued to rise, I was pulled aside to let me know that if they could not stop the continued elevation cycle, they would have to put him on a respirator. They called in an anesthesiologist to evaluate and he recommended a change in his setting on the respiratory support being provided.  They wanted to give that thirty minutes to see if it would work but then it was either put him on the vent or he would likely have a respiratory arrest.  The following story I wrote for the contest, describes how it was to wait those thirty minutes.

continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-watching-waiting-being-strong/

Watching, Waiting, Being Strong Read More »

Pathway to Power (Chair)

/
Powerchair

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 the way down the hall. I tried encouraging him to use a cane but he insisted he didn’t need one. I would regularly hear him fall. Each time I would yell, “Anything broken or bleeding?” As long as the answer was no, I would leave him alone to get up on his own (until I would hear the volume or frequency of swear words indicate it was time to step in). Finally, one day he proudly told me when I came home that he had seen a cool Irish walking stick on the internet which he had ordered. I think because it was “cool” it was okay for him to use it.

Before too long, the walking stick didn’t seem to be enough. Not only was there an issue with balance but his fatigue was so significant that any distance walking was very difficult. He would be so tired just from walking from where he parked his truck to our house, that the fatigue alone would cause his leg to give out and down he would go. If the leg didn’t give out, then he was battling the spasticity which kept him from being able to bend the leg at all. In either case, it was difficult to get him from the vehicle to the house or anywhere else. I suggested using a wheelchair which was absolutely rejected as an option. One day one of our friends showed up with a rollator (rolling walker). I told her he would likely reject the gift but since he didn’t want to offend her, he accepted it though initially he did refuse to use it. He refused, that is, until one day he fell and was too tired to get back up. I suggested he allow me to push him in the rollator, and he agreed.

After that night he allowed the use of the rollator if he needed to go a distance. I used it like a wheelchair. It was still off limits to mention the “w” word but he would allow me to push him around in the rollator. I actually pushed him around more than he walked. He really needed a wheelchair but could not bring himself to admit it. Then we had a couple of incidents where I hit something as I was pushing him along and we both went tumbling over. A rollator is just not sturdy enough to roll over cable or other object without it causing a complete stop, which, if I was unprepared for the abrupt halt, would result in us both going over. It was only when I almost got hurt from such a fall that he finally agreed to a wheelchair.

Our first wheelchair was a hand-me-down that did not have legs. I would lift his legs and pull him rather than push him. I insisted he needed a real wheelchair and he chose one he could propel himself (with the large wheels in back). He honestly tried to move himself around in it but it was apparent fairly quickly that he didn’t have the hand, arm, or shoulder strength to do that.

Having a wheelchair was a big improvement for getting him from place to place but he was dependent on my pushing him and it was fairly uncomfortable. At the time, he was getting physical therapy trying to help with regaining some strength and function in his limbs when one of the physical therapist suggested he attend a wheelchair clinic to look into a power chair. I’m so glad we took her advice.

The power chair clinic was an eye opener. I learned that wheelchairs are like clothes; you need to get measurements and pick them to fit the person. The sales rep was very familiar with MS and suggested he would need one that would allow his legs to lift and a tilt function as well as a head rest. He didn’t see the need but she convinced him that he needed to get it now while the insurance was paying for the initial chair because it would be very difficult to get it later. I’m very glad we listened to her advice because in just a few months, he needed all those features to manage.

Now his wheelchair is as much a part of him as his clothing and when it breaks, it’s a major catastrophe for us. We were recently without the tilt feature for two weeks and it was horrible. The tilt really helps me as much as him because when he tilts back, it removes gravity’s influence and it’s so much easier for me to take off his clothes or shift his position. His upper body is weaker now too so it’s difficult for him to hold his head up and not slump forward without the use of the tilt. In fact, after just two hours without it, he was really hurting and miserable. Fortunately, we had a portable access ramp that I was able to use to create an incline. It was a complicated process to set him up with this make-shift tilt but it worked. However, I must say, I felt like throwing a party when the tilt system arrived and was re-installed last week.

The last mobility device we have bought for his use is, unfortunately, one that he has never been able to use. He found a 4-wheel drive wheelchair designed by Radical Mobility in South Africa that could be used to maneuver through sand and other outdoor terrain. This awesome wheelchair was very expensive ($12,000 and not covered by insurance) but it would allow him to again participate in his favorite pastime-surf fishing. He ordered it but it never worked in the sand nor did it have the power necessary to carry Lynn up a ramp. The company said it needed to be reprogrammed and to send the controller back to them. That was four years ago and they have refused to return the controller despite our many attempts to get it back.

continue reading at: http://multiplesclerosis.net/caregiver/pathway-power-chair/

Pathway to Power (Chair) Read More »

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 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.

Standing Beside His Bed Read More »

Connecting with Grandchildren

/
Papa giving Eli a ride on the wheelchair

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 him and would sit attentively while Lynn read stories.  I could also wrap Lynn’s arm around Eli, as he sat on Paw Paw’s lap and drove him around in his wheelchair.  I would walk backwards in front of them in case Eli suddenly decided to get down but even though he was very young, he seemed to sense that he had to stay very still when riding Paw Paw’s chair.  He also interacted with him by making a game out of Eli “riding” the peddler Lynn used to keep the spasticity at bay in his legs.  I would hold Eli on one of the foot pedals while it rotated around and Lynn teased him about riding. However, he has outgrown that game.

Now that Eli is 2 years, 7 months, his primary focus is pushing trains and cars. He wants to be at eye level with the toys as he watches their every move.  He also tends to get right in the middle of the tracks and walk over them to get to his vehicles, breaking apart tracks pretty often. Unfortunately, Lynn cannot get on Eli’s level to play.  He cannot fix the tracks or re-attach missing pieces of something. Eli no longer likes to sit and listen to a book being read to him. He wants to be running around.  The result is that Lynn and Eli have very little interaction and that makes Lynn very sad.  He absolutely loves to see Eli even if all he can do is watch him play; therefore, I have had to put on my creative caregiver hat to come up with ways he can play with his grandson.

When Eli stays with me and Paw Paw, there are many times when Lynn needs attention in another part of the house other than where Eli is playing. Being that the “terrible twos” are all about finding independence and asserting their personalities, he isn’t always thrilled with stopping his play to come to Paw Paw’s room while I do something and I’m not thrilled about having him out of my sight for extended periods of time. So, I keep Lynn’s room stacked with entertainment items that Eli can only use in that room.  He has a train he can push, numbers to count in several areas (Eli loves numbers and letters), a small interactive lap pad that has number and letter games as well as some children’s radios with fun songs they can sing together. That’s worked pretty well until recently when he got new Christmas toys in another room and didn’t want to be stuck in Lynn’s room while I cathed or fed him.

continue reading at: http://multiplesclerosis.net/caregiver/caregivers-perspective-connecting-with-grandchildren/

Connecting with Grandchildren Read More »

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 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/

Spring Into Action Read More »

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

/
Many caregivers find strength, comfort, and support from their faith. Physicians report that patients who have strong belief systems recover from major events quicker and seem to have better success rates than those who have no belief systems.

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 is excruciating. You are dragging a heavy wooden rugged cross on your shoulders. The wood from the cross shoving splinters into your sunburned shoulders with every step. Your vision cloudy from the blood dripping from your head into your eyes. You can’t wipe it. Your mouth so dry you feel panicked. There is no water. You hear your heartbeat pounding in your ears. Bouncing around inside your head. Only slightly muffled by the shouting of people wishing to see you die. Every breath is more painful than the last. You are about to die, but not soon enough. You know you will be nailed to that cross on your back and left to hang for hours. You know you’re about to die one of the most painful deaths possible.

You could stop it all.
With one word you could make the suffering end and feel no more pain.
Do you do it?
Do you quit?
Most would. In fact, I’d like to argue that all would, given the opportunity. All except Jesus.
The Son of God.
Our Lord and Savior.
He continued His suffering. He valued our eternity more than His life on earth. More than His comfort. More than Himself.
Jesus came to this earth specifically to minister to us and ultimately die for us, so that we may live eternally with Him. At anytime He could’ve said “nope, this is too hard, I quit”, but He didn’t. He faced torture and death and didn’t turn away. He completed His mission. He endured all the ridicule, hatred, beatings, and lashings for us. So that we could one day know true peace in Heaven. He did this knowing a lot of us would spit in the face of His sacrifice. He did it anyway. Wow! He. Did. It. Anyway!
We set today aside to focus on the fact that Jesus died to save us from sin. Is it the exact anniversary? Probably not. Does the date on the calendar really matter in the grand scheme of things? Nope. Although we can’t be exactly sure the date this event occurred, it’s nice to have one set aside in recognition. We should be focusing on it everyday, but as humans, when we do stuff daily it seems to loose it’s feeling of being special. It just becomes an everyday thing. Ordinary, even. Once a year celebrations give us the opportunity to refocus on the extraordinary. To help our human brains keep special events special. What could be more special than someone dying to save your life?
Happy Good Friday everyone!

I’m Thankful to God That Jesus Didn’t Quit Read More »

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 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/

Frustrations of Dealing with Limitations Read More »

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 (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/

Letting Go of Unrealistic Plans Read More »

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 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/

The Many Faces of Care Read More »

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 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/

Stages of Caregiving Read More »

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 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/

Caregiving From a Different Perspective Read More »

My Mom's Words are Still True Today

/

Hazel and Roy Hale

 
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 her side, always.  She has been in the hospital three times since arriving her and he stayed by her side, night and day every time.  When she rests during the day, he sits in the same room reading in case she needs him. He cooks for her, washes up afterwards, does all the laundry, helps her bath, dress, whatever is needed, he does it and with such patience and kindness that he puts me to shame.  He is such a role model of love and perseverance that I had to share this song of love dedicated to him over 62 years ago.
PS. Mom just came through surgery after chemo was used to reduce the tumor and the doctor feels she got it all!  An amazing example of God’s love and fulfillment of prayer.  I’ll miss them when they move back home but I know that she will be in good hands with my Dad, the super husband every man should strive to be.

My Mom's Words are Still True Today Read More »

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 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/

Am I Competent to Do This Job? Read More »

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 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/

Take Care of Myself? Read More »

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 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/

Character Flaws Read More »

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 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/

Giving the Gift of Receiving Read More »

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 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/

Planning for the Future with Our Children Read More »

Managing Caregiver Chaos

/

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/
 

Managing Caregiver Chaos Read More »

Thankful for MS?

/

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/
 

Thankful for MS? Read More »

Handling Grief

/

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/
 

Handling Grief Read More »

What Happens When It's My Turn?

/

Having turned fifty-seven this week;
Hope of retirement in eight years seems bleak.
Thinking of losing my income somehow;
Is much too scary to think of just now.
To think of not having two jobs but just one
Is a dream a long time in my future to come.
For if I step down from my duties to care
Who would assume the role that I bear?
Who would be there to scratch his frequent itch?
Or to set up the peddler when his leg starts to twitch?
continue reading at: http://multiplesclerosis.net/living-with-ms/happens-turn/

What Happens When It's My Turn? Read More »

Thankful to Be a Caregiver

/

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/

Thankful to Be a Caregiver Read More »

Is This It? I Thought It Would Be Bigger

/

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/

Is This It? I Thought It Would Be Bigger Read More »

Would Hydrotherapy Be an Option?

/

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/

Would Hydrotherapy Be an Option? Read More »

The Importance of Skin Care

/

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/

The Importance of Skin Care Read More »