MS Information

Information about MS, the symptoms or treatment

MY INVISIBLE MS: SUPPORT FOR CAREGIVERS

Thank you to Sophia Nuamah for submitting the following guest post for the MS week. I appreciate her support for multiple sclerosis research and the family of caregivers around the world. world_ms_day_2019-us
Ms. Sophia Nuamah
MyTherapy
Landwehrstr. 60/62
80336 Munich, Germany
www.mytherapyapp.com/



Chronic diseases such as MS are usually termed as Invisible illness because so many people sometimes, don’t even believe you’re sick because the symptoms are not seen.
People diagnosed with MS can sometimes develop complications like Mental changes, Depression, Epilepsy, MS tremors, problems with speech and swallowing, Paralysis (typically in the legs), etc.
Some even experience relapses as they experience new or worse symptoms; and may experience some degree of reduced mobility at some point in time, and this can make everyday tasks difficult or even impossible without help.


Caregivers are noteworthy because of the critical role they play in the lives of people diagnosed with MS because there comes a point in time when they need extra help in performing normal daily activities.


Caring for someone with MS is physically and emotionally challenging. When you’re giving care and support to someone else, it is mostly very easy to disregard your own wellbeing. But it’s really important to look after yourself, mostly because staying healthy means you’ll be able to continue giving care.


Some of the ways to help maintain your physical and mental wellbeing are to take a break when needed to look after your health, renew your energy to be able to keep on with your caregiving and get help/support from others, to make sure you’re not doing everything by yourself.


For people living with MS who care for themselves, it is very important to get a support system and build social relationships to help you through the challenging stages of the disease.
Talk to people- this could be a friend, family member, a professional, or someone else who is also diagnosed with the disease or has experience in giving care; as MS can have a big impact on the people close to someone who’s living with the condition (family/friends), especially if they start to rely more and more on support from them every day.


Both people affected by MS and caregivers find that it helps to talk about their feelings and experiences of caring for themselves or other people.


Nevertheless, there have also been some technological advances in helping people diagnosed with MS manage their condition better to live normal productive lives like medication reminders to efficiently follow their treatment plans and smart devices- installed in homes to counter the problem of reduced mobility.


All these are signs of progress and hope for those living with MS, who have suffered in silence for so long; and though there’s a long way to go when it comes to invisible illness like these, Increased public awareness and more useful tools like this are making life easier for the people with them.


This infographic was created by the MyTherapy team, free app for Android and iOS.

Avoiding Typhoid Mary

Have you heard of Typhoid Mary?

Mary Mallon or Mary Brown (she used both names) worked as a cook and harbored the typhoid bacteria in her gallbladder. Wherever she worked, the families in those households became sick, and many died, but Mary herself never became ill.
Authorities believed that Mary infected over 50 people with typhoid, several of whom died. They met with her and explained that she probably carried the germ in her gallbladder. When asked to stop working as a cook voluntarily, Mary refused because she did not believe in the germ theory. She asked, “How can I be a carrier if I have never been sick?” Continue reading at: https://multiplesclerosis.net/caregiver/immunocompromised-protection/ to find out more about why I have to avoid people who might be sick to protect Lynn from getting sick.

Give Me a Hand

Someone asked me recently if I had ever written about how we adapted to Lynn’s loss of function in his hands. I haven’t, but it’s a topic that might be helpful to some, so here goes.


Lynn’s loss of the use of his hands gradually progressed over time. I’m guessing the decline occurred over maybe 3-4 years with generalized weakness initially and now no strength to speak on either side.

 

He has almost no function in his left hand/arm and minimal in his right hand/arm. I think he started noticing a decrease in responsiveness about the time of his 2006 diagnosis. I say that because I came in one day to see him comparing the speed at which his fingers would move between the two hands.

 

It was that sight that made me realize that his weakness was not just in his legs. I demanded that he see a doctor because no longer could he insist it was just his sciatic nerve. As I told him, sciatic nerves do NOT affect the shoulder, arm, or hand movement, so it was more likely to be a problem in his brain or upper spinal cord. He agreed, and so came his first MRI and the diagnosis of MS.

 

Continue reading at https://multiplesclerosis.net/caregiver/give-me-a-hand/

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/

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/

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

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/

Caregiving and Work

The type of employment you have when you become an adult makes all the difference in how you live your life.  It dictates when you’re asleep or awake, what you wear, what you’ll be exposed to, the type of people you will encounter, and your standard of living (unless you are independently wealthy or someone else contributes to your income).  Though it’s possible to change some of these by changing where you work, the bottom line is that work plays a significant role in our lives. Besides the income we derive from being employed, many jobs also provide benefits, social interaction, a sense of accomplishment, ways to enhance our self worth through positive contributions, and an identity (while especially true for men, for many (but not all) women, it’s equally true). There’s a lot of positive to be said for working.
On the other hand, “work” can bring a source of conflict.  When you’re employed, your employer counts on you to be present, timely, focused, energetic, accurate, cooperative, cordial, and do your very best on their behalf at all times.  If they need you to switch up your hours, they expect you to be able to make any necessary personal adjustments to make that happen.  For most employers, (though they might not say it) they expect your job to come first.  Many say to their employees, “Leave your personal life at the door.  When you’re here, you should not be thinking about anything else but your job.”
Though working can be a good thing, being a caregiver and an employee are often in direct conflict with each other. For instance:
Employers expect employees to be at work and on time. That expectation is often difficult, if not impossible for a caregiver.  A caregiver needs to provide the following for him/her self and dependent prior to arriving at work:  grooming, dressing, toileting, feeding (preparing, feeding, and cleanup), oral hygiene, and preparations for the day—any one of which can lead to a delay beyond their control (clothing that gets soiled after dressing has occurred, toileting that takes twice as long as usual, food spilling on before-mentioned clothing, emotional breakdowns needing attention, equipment that does not work, etc.)  For myself, I have to plan to allow three hours for “us” to get ready if I’m going somewhere and I still find that my being on time can be unpredictable.
Employers expect their employees to be well-rested and energetic.  Caregivers often get as much sleep as is available between the time they finish up one day and start the next.  Dah, doesn’t everyone?  However, the amount of times to finish a day varies depending on their dependent’s needs on that day.  Sometimes they go to bed when planned; other times a load of laundry is unexpectedly needed and they’re up an extra hour or two.  Sleep time, for the caregiver, is also interrupted by the need to assist their dependent with comfort and bowel/bladder elimination during the night.  Therefore, well-rested probably means just enough sleep to be functional and the amount of energy they have is directly proportional to the amount of caffeine ingested and still in their system.
Employers need their employees to be focused and provide accurate and competent performance.  Being focused for a caregiver is a question of being focused on what?  The caregiver always has to be planning ahead to make sure he/she is ready for the next big event and is required to coordinate all their dependent’s activities and needs whether in their presence or if receiving assistance from someone else.  It is not uncommon that a caregiver would need to call a doctor or therapist while at work to discuss a new development, arrange for equipment or supplies to be repaired and/or delivered, or to talk to the secondary caregiver regarding a question or concern that has arisen.  Caregivers have to have the ability to have split personalities at all times because when at work they need to be able to address effectively their work duties while at the same time managing the life of their dependent. They, in fact, do have great talent at being focused but the need to switch focuses repeatedly is where the problem comes in.
continue reading at: http://multiplesclerosis.net/living-with-ms/caregiving-work/

What's a Ratchet?

When I took on being a full time caregiver, I knew I was taking on full responsibility for skin care, elimination, nutrition, hygiene, assistance with activities of daily living and even physical therapy.  What I hadn’t counted on was taking on my husband’s role of maintenance mechanic for our home. Having a medical background, I’m comfortable with the caregiver duties; not so much with the mechanic ones.  In fact, they intimidate me to the point of panic when Lynn says something like he did last night, “Go get a ratchet.”

His electronic peddler (that he had been using almost non-stop for spasticity release for the past three years) recently bit the dust.  We had taped it up with duct tape, oiled all visible parts, and my solution, jiggled it unmercifully, with no success.  Resuscitation attempts of the old one was “called” and we had to pull out our backup peddler.  Unfortunately, when we turned on the backup, this terrible grinding noise could be heard with every rotation.  Since the grinding seemed to be coming from the motor, Lynn’s recommendation was to order a new one and return the noisy one when it came in.  So I did.  Well, the new one isn’t noisy but it has a hitch in its giddy-up.  Every rotation now is accompanied with a shimmy jump that can be felt in the base of Lynn’s foot and all the way up the leg. Upon watching the action for a period of time, he made the pronouncement, “I don’t think the arm is tight enough.  You need to tighten up the bolt. Go get the ratchet.”
Hearing the, “Go get…” was like a Pavlovian response for me.  My skin became clammy; I developed tunnel vision; and the muscles in my head and neck tightened.  It happened to be raining yesterday so my arthritic hands were already screaming with every use. “Wait a minute.  I can’t tighten anything today,” I responded. “My hands hurt, too, much.”
“It will be okay. The ratchet will do all the work.”
To myself, I’m mumbling, sure, that’s what you always say but outwardly, I’m saying, “okay, I’ll give it a try.”  So, off I go in search of a ratchet.
Lynn has not been in the garage in at least five years.  During that time, many of his friends, our kids, and I have gone into the garage to use his tools.  He remembers the tools being right where he last saw them. That’s not exactly true anymore so the first thing I have to do is search for and locate this item that I don’t know what is.  He describes it as a long silver tool with a thing like a bolt sticking out the side at the end of it.  I start looking under things, opening all the drawers in the tool box, moving things around and piling them into new heaps (that will again cause confusion in the future because they have again been moved), until finally, I find three silver things that match the description.  “Is this it?” I ask my mentor.
“Yes,” he responds, “but you also need the sockets.”
“Okay, what are those and why didn’t you mention that before?”
“Those are small silver round things that you put on the bolt and which inserts into the racket.  There is a metal strip out there that has what you need on it.”
He doesn’t answer my question on why he didn’t tell me this the first time and I proceed to look for sockets.  I find a metal strip with silver things that match his description.  At least half of the slots are empty so I look through drawers again finding similar items and again return to Lynn.
“Where’s all the sockets that belong on the strip?”
“Who knows?  I told you things have been moved around. This is all I can find. Okay.  What now?”
Lynn proceeds to tell me how to remove the protective cap covering the bolt on the arm of the peddler. Then we go through how to select the correct size.  I try to figure out how to attach the socket to the racket finally being successful after multiple attempts to push it into place. I put it on the bolt wrong, feeling totally inferior as a mechanic.  It doesn’t work so I try it the other way and it works!  After multiple, painful, tightening attempts, the arm of the peddler seems tighter and the squeak that was accompanying the giddy-up hop goes away. Triumph!
Finish reading this post at: http://multiplesclerosis.net/living-with-ms/whats-ratchet/

One Minute He's Hot; the Next He's Cold

The thermostat in my house is currently registering at 77o ferneiheit.  With all the activity I’ve been involved in today, I’m now sitting here melting at my computer. Meanwhile Lynn alternates between being hot and cold but mainly stays cold.

Before the days of MS, Lynn’s body temperature ran hot. It could be the middle of winter and he would be outside in shorts and a T-shirt cooking on the grill.  We used to joke that one day he would spontaneously combust into flames because he just radiated heat.   That changed shortly after his diagnosis.  He gradually became less tolerant of heat.  Instead of setting the temperature indoors to a chilly 70, he would be satisfied to allow me to set it at a more comfortable level where it was no longer necessary for me to bundle in a blanket and wear gloves to watch TV.  Then he went from being warm to the touch to being cold.
Lynn developed a urinary tract infection that was mistreated for a couple of months resulting in his becoming very ill.  His body was not able to fight off the infection and he became weaker and weaker.  As his health declined, he became cold. At times it was necessary for me to wrap him in blankets, put fleece lined footwear on him, cover his hands in gloves, and heat up sandbags to lie over his hands and against his body.  He was freezing all the time.
Eventually, he had to be admitted to the hospital and while there, he aspirated and developed pneumonia.  It wasn’t caught at first, because he had no fever.  He was very lethargic; sleeping all the time. His blood pressure was low as was his pulse, and his body temperature simply did not register.  For almost two days the staff just attributed the temperature difficulties to equipment.  Finally, one of the care partners got a rectal thermometer because she felt something just was not right.  Rectally, his body temperature should have been a degree higher than orally; however, his body temperature still did not register.   When they finally were able to get a reading, his body temperature was 90rectally!  He was immediately put into the ICU and a heat blanket used for hours to gradually bring his body temperature back to normal.
To continue reading, click here: http://multiplesclerosis.net/living-with-ms/one-minute-hes-hot-next-hes-cold/

Put Guilt Back in the Box

There are a multitude of emotions that play into being a caregiver or being the one with the chronic disease that needs the care. Which emotion takes front stage on any given day is affected by how you feel, how the other person feels, how much sleep you got the night before and what else happened that day.  One of the emotions that I have to battle more often than most is guilt. I think I struggle with it the most because I can’t seem to be what I think I should be and I can’t always do what I think I should be able to do. In my own mind, I know that when I say I will do something, I absolutely know that I can do it—I am quite capable; I have the knowledge, the skills and the ability to do what I say I can do.  Then something happens to prevent me from getting to it or doing it as well as I had wanted to do, and the guilt sets in.

I am extremely fortunate that I have a job that can be done from almost anywhere as long as I have a phone, a computer, and access to the internet.  Since I have all three at home, my manager allows me to telework.  I come on site at least once a week usually to attend meetings or to provide training.  I often attend meetings through teleconferencing but sometimes I just need to see a person’s reaction to be able to pick up on how a conversation is really going. On the days I go in, I often set up back to back meetings so I waste no time when I’m there.  To go onsite, it takes a minimum of four hours to get ready to go.  Unfortunately, our morning routine does not always go as planned.  Not to gross anyone out but sometimes the bathroom process doesn’t go as well as we would hope and it puts me way behind schedule.  Other times, I get a text from whoever was supposed to come that day saying they woke up with a runny nose or cough.  We try not to expose Lynn to any infectious or viral conditions because it sets him back so far so I scramble to find a replacement and often, that’s impossible so I have to stay home.  I HATE WHEN THAT HAPPENS.  I feel so guilty when I have to reschedule appointments or even when I have to say that I’ll need to talk to them by phone because I know they would prefer to talk face to face.  Though I still manage (usually) to get the work done, it’s not how I wanted to do it or when I needed to do it so I feel guilty and very critical of myself.
Now, flip that coin.  When I have to cancel going into work because Lynn’s body refuses to do what we need it to do or we can’t get someone to stay with him so he doesn’t have to be alone (note:  he can stay alone for maybe an hour or even two at most but no longer than that because he can’t get food, drink, or empty the urinary drainage bag for himself), Lynn feels so guilty.  He knows that I am jeopardizing my reputation for his sake.  Knowing that if he could just do those things for himself, I would not be under the pressure I live under every day makes him very depressed at times.  I need to be able to share my frustrations with him but I hesitate to do so because I know that guilt will certainly rear its ugly head.    It doesn’t matter that he has no control over what happened and that he absolutely can’t do these necessary things for himself so it’s really not his “fault” but to his way of thinking, it’s entirely his fault because if not for him…..  He is also afraid that one day, I’ll be so overwhelmed with all the responsibility and so tired of the struggles, that I’ll just walk away; so on the one hand he feels guilty and on the other hand he feels afraid. Yuck.
Read more at: http://multiplesclerosis.net/blog/put-guilt-back-box/

The Impact of Caregiving on the Caregiver

s I was taking my morning dose of Advil (4 tablets rather than 2), I was curious about my future as a caregiver and what being a caregiver was doing to me personally.  So I thought I would look up to see if any research had been done on that topic. The Family Caregiver Alliance had a nice comprehensive summary of what research says on their website.  I caution you though, that if you are the receiver of care, this might make you feel guilty and if you are the caregiver, it might make you feel depressed. That is not my intent.  I think these facts are important to realize; however, so that appropriate decisions can be made for everyone’s future.

 Mental and Emotional Health Impact of Caregiving

  • Caregivers have higher levels of depression (40-70% have signs of clinical depression).
  • They often have coexisting anxiety disorders, substance abuse or dependence, or chronic health disease along with depression.
  • Caregivers have higher stress levels experiencing symptoms of frustration, anger, feeling drained, guilty or helpless.
  • They report feeling a loss of self identity, lower levels of self esteem, constant worry; feelings of uncertainty, less self-acceptance and feel less effective and in control of their own lives.
  • More than one-fifth (22%) are exhausted when they go to bed at night and feel they cannot handle all their caregiving responsibilities.
  • Caregivers who experience chronic stress may be at greater risk for cognitive decline including short-term memory, attention and verbal IQ.

Studies indicate that stressful caregiving situations may result in the caregiver participating more often in the use of alcohol or other substance abuse and caregivers often use prescription and psychotropic drugs more often than non-caregivers.  In addition, family caregivers are at greater risk for showing higher levels of hostility.  Over time as clinical depression increases and the person they are caring for shows greater impairment in mental and physical dependency, the caregiver is more likely to engage in harmful behavior toward their loved one if they themselves have become depress. Depressed caregivers also show a greater incident of suicide.

 Caregiving Impact on Physical Health

  • Eleven percent (11%) of caregivers say their own health has declined since taking on caregiving responsibilities.
  • Caregivers have a lower level of subjective well-being and physical health. In 2005, three-fifths (45%) of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared to one-third (24%) of non-caregivers.
  • Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), increased tendency to develop a serious illness, and have high levels of obesity and bodily pain.
  • Studies show that caregivers have a diminished immune response leading to frequent infection and increased risk of cancer (caregivers have a 23% higher level of stress hormones and 15% lower level of antibody response).  They also suffer from slower wound healing.
  • Ten percent report they are physically strained.
  • Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk for the development of cardiovascular syndromes such as high blood pressure and heart disease. They also are at greater risk for diabetes and higher levels of cholesterol.
  • Women who spend 9 or more hours per week caring for a disabled spouse increase their risk of health disease two-fold.

to continue reading this blog, go to http://multiplesclerosis.net/living-with-ms/impact-of-caregiving/

Second-Hand MS

Before Lynn was diagnosed with MS, my experience with the condition was from a distance.  I knew of a third cousin with it that family members talked about in sympathetic tones of doom.  I had a few encounters with colleagues who had MS and who shared some of their struggles with me when they asked for my assistance in obtaining a reasonable accommodation (I work in Human Resources) so they could perform their jobs successfully.  I remembered some information from my nursing training twenty-five years previously but it was mixed in there with the rest of the chapter on neurological conditions so I wasn’t sure if I was remembering symptoms of MS, Muscular Dystrophy,  Myasthenia Gravis, or something else. I knew enough to know that I needed to learn more.
Our first appointment with the neurologist was a little over-whelming.  We came home with a bag full of literature to pour through to decide which medication he might want to try, the option to participate in a study, and several pamphlets that basically were along the lines of, “so now you have MS…”  Lynn didn’t want to have anything to do with any of it.  He gave it to me; said, “tell me what you think,” and turned his back on the entire thing.  At that point, I believe he was too depressed to let anything in.  He wanted to be in denial and would not even let us say aloud that he had MS.  His philosophy was, “If you say you have it, you give it power over you and I’m not going to do that.” While I could understand where he was coming from, on the other hand, MY philosophy was, “knowledge is power,” so we immediately separated into our two corners to deal with the situation.
…So began my journey of having “second-hand” MS.
Continue reading at http://multiplesclerosis.net/living-with-ms/second-hand-ms/

Buying Health

There’s a lot of talk these days about health care reform and making sure the uninsured have coverage.  I don’t want to debate the strengths and weaknesses of the law but I do want to comment about the struggles associated with having a chronic health condition and how much is not considered when adding up the cost.
Fortunately, most of Lynn’s prescription costs are covered.  If we didn’t have insurance, our cost would be over $5,000 per month for just his MS drug.  In addition to his MS medication, he takes meds for other conditions like high blood pressure, mitral value prolapse, neurogenic bladder, MS depression, hypothyroidism, and others.  Just the cost of meds alone would send us into bankruptcy or more likely, we just couldn’t afford for him to take anything if we didn’t have insurance coverage.  Total cost for his meds last year (insurance + copay) was $58,000!
Besides medication, his dietician has him on numerous dietary supplements to support neurological cell regeneration and to assist with energy and autoimmune responses. We spent $6,500 for those last year. That does not include the fact that most of what I buy for him now is organic or meats that have been grass fed.  Don’t know if you’ve checked out the price of organic food lately but it’s not cheap.  Grass fed meats and pastured poultry is also much more expensive than buying the store brand. We have discovered that his body does not eliminate harmful chemicals ingested or absorbed and that he’s been storing them up for years.  We are working now to get rid of all those toxins so the last thing I want to do is put more in there from fertilizers, hormones, or other chemicals used to buff up the animals or prolong storage and/or appearance.
Totaling our cost continues:  food and medications–covered; now for supplies.
Each month, I order medical supplies (self-catheters, in-dwelling catheters, gloves, lubricants, catheter insertion kits for travel, etc., skin care and barriers, lotions and ointments for various needs, and miscellaneous other supplies particular to his care.  I have shelves in an unused room full of such daily used supplies as well as other “in case of” supplies.
All of the above are the routine costs of daily living, but there are other more costly purchases which fortunately do not occur every day but when they do happen, they really take a toll on the purse strings.  For example, at various times we have purchased a cane, rollator, manual wheelchair, bedside commode, shower chair, and power wheelchair.   We were fortunate beyond words to have our church donate the cost of putting in a ramp so Lynn could get into and out of our house and a roll-in shower to make it easier to bath him.  Our house is a rancher so we have not had to decide between moving, putting in an elevator, or redoing a lower level to make accessibility available inside the house. Others, I know, have not been as fortunate.
To read the rest of this post, click here: http://multiplesclerosis.net/living-with-ms/buying-health/
 

Is There Really Anything to Being On An MS Diet? We Think so

Early in discovering how to cope with MS symptoms, the nurse who works in Lynn’s neurologist’s office suggested that he might want to see a registered dietician.  Lynn was feeling pretty rough all the time.  He had no energy and more than that, he just felt bad.  She shared that her husband had been seeing someone who had really made a difference in how he was now feeling.  Though her husband did not have MS, she strongly suggested we give it a try; so we did! Two years later, I must say, it’s the best decision we ever made.  In fact, Lynn was just saying today that if he had to give up all his doctors/therapist but one, the one he would keep is his nutritionist!
The first step we took when seeing the nutritionist was to keep track of EVERYTHING he ate for a week. This allowed her to see what his eating habits were –what might be good and what might need to change.  The first thing she told us that had to change immediately was that he needed to stop eating dairy and become gluten free.  Both dairy products and gluten create more inflammation in the body.  Her goal was to reduce or eliminate as many foods as possible that would trigger an inflammatory response.  The next goal was to increase ingredients into the diet that would support the neurological system.  She had attended a conference where the research of Terry Wahl was presented.  Dr. Wahl had secondary progressive multiple sclerosis and went from being wheelchair bound and unable to do much of anything to using only a cane, riding horses and returning full time to work.  Hearing that; we were hooked on trying it.
Click here to read more: http://multiplesclerosis.net/living-with-ms/is-there-really-anything-to-being-on-an-ms-diet/

Arsenic, Mercury, and Lead – What do They Have to Do with MS?

If it’s one thing I have learned in caring for my spouse, it’s that in order to keep him healthy and functioning at his optimum level, I have to take a holistic approach to his care.  Taking MS drugs to prevent exacerbations helps prevent significant loss of function; however, if his body is not in the best shape possible to fight attacks from viruses or bacteria or if he’s injured or allows his body to become de-conditioned, those issues are just as significant to his well-being as the medication he takes. Therefore, Lynn’s wellness regime includes a diet that targets mitochondrion function (repair of nerve cells); he exercises every day focusing on different muscle groups; and he rests when he gets tired.  At his last neurologist visit, his functioning was better than the visit before and as it had been the visit before that.  In fact, the neurologist stated, “You’re surprisingly better and it’s not due to what I’m doing for you.  Keep up the good work.”  It seems that he’s doing all the right stuff so why is it that he continues to feel so bad?
Lynn has been taking Rebif for almost two years now.  If you’ve taken Rebif or know anyone who has, it has the ability to make you feel like you have the flu; however usually that gets much better as your body adjusts to it.  That hasn’t happened for Lynn.  In addition, as a side-effect of Rebif, his thyroid stimulating hormone levels became high indicating that his thyroid was not working properly.  Hypothyroidism makes you feel cold, extremely fatigued, and generally miserable. So hypothyroidism was blamed for why he felt bad; but then the thyroid levels began to get back to near normal but his fatigue and general malaise seemed worse. Was this just another MS issue he would have to live with? Maybe not….
The best healthcare provider he has had by far to date is not his neurologist but his dietician. She’s amazing. We were having one of our regular consultations with her and describing how bad he felt and she quickly became suspicious that something else might be going on. She asked his primary care doctor to do a urine test for heavy metals.  She requested a six hour provoked test which required him to take some pills that stimulated the release of heavy metals that might be stored in his cells into his bloodstream and later excreted into his urine.  This test would show potentially if he had stored heavy metals in his system that might be affecting his health.  We were shocked at the results!
To continue reading, click here: http://multiplesclerosis.net/living-with-ms/arsenic-mercury-and-lead-what-do-they-have-to-do-with-ms/

A Little to the Left Please

I often complain about how picky I think Lynn is.  One of my greatest frustrations is how much effort it takes to get something right for him.  It has to be “just so” before we can stop fiddling with whatever it is.  I’ve always thought that it was just because he was picky but something he said last night made me realize that he really was just trying to get comfortable.  He was telling me that his son said to him once, “Dad, you just have to accept that you’re going to be uncomfortable occasionally.  Just accept it.” (I’ve often had that same thought) Lynn’s response back was, “But you don’t understand. I’m uncomfortable ALL the time.  When I keep asking you to do it over, I’m just trying to get the extreme uncomfortable down to a mild uncomfortable.”
When I heard him explain it that way, it helped me to understand his world a little more.  He actually does not complain a lot.  True, whenever I enter the room I have to do  4-10 adjustments to some part of his body comfortable, but after he gets it where he wants it to be, he’s pretty quite till the next time he needs something.  He’s not a big complainer and I think he would certainly have a right to be.
Since MS is a condition that affects the nerves, I’m assuming that not only does it affect how something functions but it also affects how sensitive the nerve it.  Thus, I expect his nerve pathways are really hyper and that’s why he can’t seem to get comfortable.  His skin itches a lot (I use a lot of lotion on him which helps some) and he can’t scratch it.  That could be a good torture technique, to make someone itch and not let them scratch. It could just about drive you insane, I bet.
Not only is an itchy spot a mental torture, but a side effect of an unscratched itch is that it can trigger his legs to jump. If you’ve ever experienced restless leg syndrome, it’s a lot like that.  The tension builds and builds until it suddenly releases in a spasm causing his leg to jump. So many small touches or scrapes seem to be able to start that spastic response in him-a corner of a towel rubbing gently across his leg, something liquid falling on his shin, anything hanging over his chair that occasionally rubs his legs. Something that simple triggers the nerve build up and then he gets the spasm.
He also seems to have the “princess and the pea” syndrome.  He feels a lump or something in his seat cushion or under his leg and I have to find the irritating culprit. It seems the smallest crease can really cause a lot of pain after hours of sitting in the same position.
I realize that not having use of his hands puts him at the mercy of whomever is around.  I often complain because he expects me to innately know where the discomfort is and to fix it.  Trying to get him to describe where the offensive site is can be a real challenge.  I keep asking for more detail while I make an educated guess regarding the exact location.  If I really think about it, he’s actually pretty good at describing where it’s located.  It’s not an easy thing to do.  I was seeing a surgeon about possibly having surgery on my hands and he was asking me where it hurt and how and I had the hardest time narrowing down the exact location.  Pain sort of radiates to multiple areas so finding the epicenter can be a challenge.
At any rate I need to pray more for patience with him and the difficulties he has with getting comfortable.  He really manages it all remarkably well and I just need to put myself in his wheelchair before I make a comment.

Now This is What I Call Accessible

you asked for it!For the first time in eight years, Lynn has been able to “swim” in the ocean.  He was overjoyed at the experience (that grimace in the picture is only due to the wave splashing in his face; he was having a blast) and so were we.  So in spite of the fact that Radical Mobility apparently lied to us about sending us the parts to make his 4wd wheelchair work for our beach vacation, we found a truly accommodating community that supported our needs.
During the winter, I was told by one of our home health providers about a handicap accessible house on Emerald Isle in North Carolina.  She told us that the fire department there loaned floating wheelchairs that could be used on the beach on a first come first served basis.  We checked it out and found a beach house that had a ramp that lead directly to the beach and was able to get a wheelchair from the fire department.  Those chairs are incredible! They have huge back wheels, slightly smaller front wheels that are very bouncy and are made from materials that can get totally wet.  Therefore, when you get the chair in the water, it floats up.  It took three of us to hold it steady in the water but he was able to ride the waves!
After playing at the beach, he took a day off to re-energize and on Wednesday, he hit the beach again.  Though, my husband thinks he’s brave; I just know he’s crazy; but he wanted us to tie a rope to his life vest and let him float in the water without the chair!  He was convinced that the vest would keep him from drowning.  We tried to argue but he was not budging.  So I tied the rope to the top of the vest and let him see that when the waves came in, the rope swirled around in the water and could create a safety risk itself.  He finally saw that and agreed that was not a good solution. Finally we compromised.  We sat him in the water a few feet from the edge of the surf so it would hit him mid-chest. He wanted to lie on a buggy board to float but we convinced him that face down in the surf without the ability to hold onto the board, might not be very effective.  He tried to clutch the board and realized his spasticity would not allow him to do what he wanted and gave up on that, but he still had a great time.
This has been such a great vacation for him.  He’s finally realized he needs a day of rest between events and that has helped.  He has been able to participate by sitting on the deck that overlooks the sea because it’s plenty big enough for his wheelchair to maneuver around.  He has been a part of the group or alone based on how he feels.
The rest of our group has been very supportive to us both.   Though I cannot get away without putting in an indwelling catheter which limits my outing times, I have been able to get away twice to run errands and his son takes over my role.  Plus his son is much stronger than me so he’s helped with so much of the moving and lifting.  We are so blessed by our supportive and loving family who have often put our needs before their own.
We have also have our grandson with us as well as my parents.  Altogether we have had eight adults and 1 child (age 15 months so he’s into everything).  Both my husband and the baby are special needs so we have all taken turns Eli at the beachrelieving the baby’s parents and they in turn relieve me.  It really helps to make vacation time manageable; otherwise the extra efforts needed to survive in a house that is not set up to meet the “patient’s” special needs would make a vacation miserable.  To be honest that has been the case for many of our former vacation years.  Not so, now.  We have found our vacation spot!
In fact, I’ve put in a “pre-registration” for a house next summer in this same area that has a roll-in shower, handicap ramp, a pool, and an elevator.  I’m really excited because the shower is still a bit of a problem here.  They have an outdoor hot/cold shower but it does not have sitting for the disabled so we have hooked up a hose to the spout and shower him just outside the shower itself.  It’s a bit cool doing it that way though plus he can’t take his shorts off since  it’s outside and could be viewed from the street.  Don’t want an x-rated show for the neighbors.
I wish all communities were so sensitive to those with special needs.  It should be that all people can have the same opportunities to access the beach; not just those with two feet.  Emerald Isle is such a community and I’ve been very impressed with them.  If you’re looking for a great summer spot, I highly recommend them.lynn going to beach

Choices and Calculated Risk

I had to make a choice this week about my own care that turned out well but according to the urgent care doctor I saw, was not very bright.  Maybe so, but it was a calculated risk and one that I felt was the right decision at the time and as it turned out, was the right decision in retrospect as well.
You see, I have a lot of allergies and sensitivities.  I am often caught off guard by some new thing I’ve become allergic to so I keep epi (epinephrine) pins around just in case.  Well, Saturday night I noticed I sure had a lot of bug bites for only having been on my deck picking hot peppers for a few minutes.  As the night progressed, they were even itchier and in more places.  By morning, I had patches of hives all over which itched me to a frenzy if anything touched them; especially my hands. I wanted to claw the very skin off my hands!!  It was awful.  I figured the cause was either this new drug I had been put on for arthritis pain or the extra dose of a supplement I was taking so I stopped them both to wait for it to pass.  By night time though, I wasn’t feeling so well.  Besides the hives, I had started to feel a lot of burning pain in my GI tract and my esophagus was feeling like I had a thick lump in it. Since I have lots of medical equipment around here, I took my blood pressure–fine–my pulse–fine–and my breathing was not labored nor was my oxygen saturation off.  So having assessed my own condition, I decided to use the epi pin to stop the progressing reaction.
It helped a bit but I was still miserable and it was worse again the next morning.  Being Monday, I thought that Lynn’s family was coming so I was preparing to go to the urgent care center when they got here.  They were late so he called to see where they might be. His mom reminded him that she had told him the week before that they were coming on Tuesday, not Monday, this week.  Now what? I couldn’t take him with me because he was not feeling great either (his thyroid hormone level is way off) and besides who would take care of his needs while I was being examined etc.?  Though I hated to do it, I decided to call my daughter who has the baby that doesn’t like to eat so she is busy all day long with his feeding tube, therapy, and such.  I honestly had about decided not to go but to just suffer with the intense itching when I realized that I needed to take care of me for once. I also knew that if I didn’t call her she would have felt awful that I did not ask for her help.
As it turned out it was the perfect time of day for her to be able to come over.  I finished Lynn’s care for the morning, put in an indwelling catheter, and hooked him up to his peddler. She got here before I even got him completely ready and off I went.  I’m now on prednisone and the BEST non-itching medicine I ever had, Zyrtec. It was amazing.  I went from frantic scratching to no itching at all in a few hours.  I highly recommend it.
As I look back on this situation, I realize that I have become so used to being the caregiver that I cease to care for myself at all.  While I’ve had enough allergic reactions to be able to gauge pretty well what I need to do, those reactions can trick you and I should have done as the doctor said and call 9-1-1- right afterwards.  Why didn’t I? Because what would I have done with Lynn that late at night?  I hated to call someone out of bed to come stay with him.  I didn’t feel like I had the energy to put in a catheter.  How would I get home if an ambulance took me to the hospital? It just seemed too much of a hassle so I decided to just wait it out.  In reality, any one of our children would have come over to help if I had called.  One would have stayed with Lynn, one would have gone to the hospital and the other would have helped in whatever other capacity was needed.  I know this but I just didn’t want to ask for the help.
I am a caregiver and not a care receiver.  I know that one day something will make me a receiver but I don’t want to change that role right now.  I want to give and not receive…but then so did Lynn when his MS got worse….
We don’t have a choice often in life but to deal with what we get and make the most of it.  Sometimes we make the right choice; other times not so good.  I was lucky this time but I do need to keep in mind that if I don’t take care of myself then I won’t be here to care for him.  Therefore, as his caregiver, it is my responsibility to do what I need to do to be well enough to keep going….and going….and going…..

Accepting What You Grow Up With

When I was young, no one in my immediate family had any type of visible disability.  I grew up in the “country” and all the adults and children were physically active and spent a lot of time in physical labor.  I remember helping my parents build the homes of other family members. By the time I was twelve I had helped lay cinder block, shingle a roof, painted walls, hammered nails, dug in gardens, cleared land, etc.
My story was typical of the experiences of others in our community (we didn’t have neighborhoods per se because most houses had at least a few acres around them so all our neighbors were further away than a stone’s throw).  I knew or was related to almost everyone for miles. There were a few people I knew who had disabilities, but not many. I had a great-uncle with no arms. There was a family that lived next door to my cousins where the parents could not hear but their child could.  I also had a third cousin who was paralyzed from the waist down and who was married to someone who had survived polio and walked with leg braces. Other than that, I can’t say that I was aware of disabilities at a young age.
I remember as a child being very curious about how to talk to Mamie Lee and Tommy who were both deaf when they first moved in beside my aunt and uncle.  My cousins knew some of the sign language they used because they were related to them on their father’s side. I remember trying to learn some of the signs because I thought it was a neat way to talk.  They seemed to understand what we said, but I couldn’t understand them as well.  They were good at pantomime though so it was no big deal to get a message across. I didn’t really consider them disabled; just different. Though they couldn’t hear, as a kid I sort of liked that about them because it put us kids at an advantage–we could be as loud as we wanted when we were at their house and not get yelled at; plus we could sneak into rooms which were off-limits usually (though Mamie Lee was amazing at seeming to know what we were up to anyway).
I also remember being curious about my third-cousin, Glenn.  He was paralyzed due to a car accident.  I would watch in fascination as he would drive his own car and then, by himself, remove his wheelchair from behind his front seat and transfer himself into it.  Though he had no use of his legs, he was very able-bodied.  He was a watch repairman and an awesome banjo picker.  He seemed to get around as well as anyone and seemed happy most of the time. His disability; however, being visible was more obvious and the need for us to help him when he visited was apparent.  For example, when he visited, we either all stayed in the yard to visit or Dad put up planks so he could be rolled into the house.
Then there was Uncle Grover… a truly amazing man.  He was an excellent plumber.  He loved to fish, grow his own garden, drive a stick-shift truck, and knew how to do just about anything.  He also had no arms.  One was lost in a hunting accident and one got catch under a mill-wheel and was ground off.  I never thought of him as disabled either; only amazing to watch how he was able to do things with his stubs. I do admit though sneaking sly glances at his stumps and wondering about them.  He caught me looking once and took the time to show them to me and answer my questions about them.
I’m sure there were others who had physical limitations and some that I knew about but just didn’t see as often so they did not make an impression. I heard about a distant cousin with MS but never saw him.  We had a few relatives with dementia; one with schizophrenia, I believe, based on what I now know about the condition.  My point in this “memory lane” experience is that maybe I don’t remember them as being disabled because we only see someone as disabled when they are not part of our lives.  If we grow up around someone with a disability, then they just have a different “normal.” The need to accommodate them becomes an assumed responsibility and we automatically adapt.  We can talk about their situation, ask questions, and learn how to interact with their physical challenges so that it is no longer a mystery that stands out as being different.
You may be wondering why this was on my mind…
I was watching my grandson yesterday around Lynn.  Eli is at the age where he crawls everywhere and now that he’s out of the hospital, his feeding tube has been accepted by him as just another piece of clothing that sometimes gets in his way.  Other than that, he does not pay attention to it.  On the other hand, he is fascinated by his grandpa’s wheelchair and other mechanical devices.  I can put him down anywhere in this house and he makes a beeline to Lynn’s room to see if he’s on his peddlar or foot massager.  Eli loves both (so does Lynn). He also loves to check out the wheels and “drive” the controls on Lynn’s wheelchair (obviously we cut off the power when he does that or else Lynn would likely drive through a wall).
I wonder if Eli will grow up with a different understanding of disability?  Hopefully, he won’t have his feeding tube for many months so that will not be his point of reference; however, seeing his grandfather unable to care for himself and learning that special consideration is needed for him, will that make him view others in their wheelchairs as “normal” like his granddad? I hope so.  I hope that his exposure to caregiving from being around us will make being around others with disabilities something he just accepts as a different normal.  I hope when he looks back on his childhood, as I did above, he will remember the funny stories of meeting the challenges associated with the disabilities and be amazed at how well the disabled adapt to their worlds.  I also hope that he will be able to help others understand wheelchair etiquette and learn to view the surroundings for obstacles that make participation by the disabled a greater challenge…and assist in removing those obstacles.
I fully believe that God puts people and experiences in our lives to prepare us for situations in the future; sometimes to help others but also sometimes to help us.  Eli will have skills for caregiving and compassion that he would not have if his granddad was not in a wheelchair. Perhaps God is using Lynn to show Eli a way of life that He will ask him to incorporate later into one of His missions for him.  It’s a nice way of viewing Lynn’s disability as having a greater purpose for the good of others.

Just Sharing

Usually I have a theme for my posts, but not so today.  Instead, I just want to share what’s going on in my life because life doesn’t stop for a caregiver; it just gets busier and busier.
Lynn:  He has started to feel better from taking his Rebif. Hallaluyah!  It only took a year.  Though he still has fatigue, it’s much better; except for this past week. For some reason when pollen comes out each spring, it really hits him hard.  He needs about 25 squirts of saline mixed with nose spray every time I enter his room and sometimes twice while I’m there.  He has felt very tired all week and rather depressed. The depression leads to impatience and irritability so my tolerance has been stretched as well.  He seemed better today so I hope he’s getting adjusted.
Eli 146My grandson, Eli:  Poor little guy has been labeled with “failure to thrive.”  He’s 10 months old and the size of a five month old.  He has not gained height or weight in several months. He will only drink 2-3 ounces of breast milk at a time and if he eats solid food, he breaks out in a rash.  The GI specialist says his tummy probably has the same type of rash inside as he skin outside and so it hurts him to eat. He’s on an formula that has been added to the breast milk and it smells bad and must taste bad because he pushes it away as soon as he tastes it.  We’re trying to get him to drink at least as much as before adding the supplement but he’s really fighting it. If this is not successful, he may need a feeding tube.  It’s very frustrating and anxiety producing for his caregivers but the little guy is just as happy and loving as he can be! His smile is infectious and he’s a joy to be around. 
His mom, my daughter:  She bent over a chair Monday and broke two ribs!  She also broke her ribs bathing Eli when he was about two months old so now we have the added concern of why are her bones breaking so easily?  Bones don’t usually break unless an unusal stress or intense pressure is applied. She just leaned over the chair.  So, she’s having all sorts of lab work done plus a full body bone scan and a bone density test to figure out what’s wrong.  Though they do not suspect cancer, bone tumors or bone infection can be the cause of such breaks.
While she goes to the doctor, I keep Eli and Lynn.  A typical hour from such a day:
     Lynn:  “Sweetie, I need to pee.” (I pick up the baby, settle him into something he can’t get out of, cath Lynn and deal with whatever else he needs.  Meanwhile, baby gets fussy.)
     Eli:”Mamamamamam, (squeal), dadadadad, (whine)” hands reaching up, whining getting worse; he’s rubbing his eyes and needs his bottle. (I settle Lynn, go heat up the bottle, with Eli crawling around my legs begging for his milk that he wants THIS MINUTE)
     I rock Eli to get him sleepy so he won’t fight eating.  As his eyes start to shut, I remove his pacifier and stick in the bottle. Success, he eats 2 ounces.  I try it again in a few minutes- another ounce-and that’s all he will take.  I finish rocking him to sleep (he’s a very light sleeper; if you move he wakes up and is ready to play) I start to fall asleep (I’ve only slept six hours so I’m always tired) and after about 20 minutes, I hear:
     Lynn:  “Sweetie, I need to pee”  and we start over.
      I never ends…
My son:  He’s getting married on Friday at our house and having the reception on Saturday at our house so Lynn can attend and have a place to rest. So my house is covered in flowers and wedding preparations and every spare minute I’m busy working on something related to the wedding.  I’m taking next week off from work to get it all done because I’m WAY behind. I don’t even have a dress yet!  But I’m very excited and happy for them both.  It’s been a lot of fun helping them put it all together.
Me:  I’m seeing a surgeon on Monday.  My right thumb joint needs to be replaced.  I can’t really put it off any longer.  It’s painful all the time, I can’t open anything with it, I can’t grasp anything so I need to get it done BUT, what am I going to do with Lynn? I’ll need some respite care of course but I won’t know till I see the surgeon how long I’ll be unable to use my hand.  Ugh….I dread dealing with his needs more than I dread surgery for myself.  I don’t know how I’ll afford the continuous care but I’ll need to see if we can get help for 24 hours because I can’t cath him with one hand nor can I transfer him into or out of bed with one hand.  Wish me luck on this one.  May take several weeks to work this out.
My work:  busy as usual, still needing me when I’m needed at home. 
So as a caregiver, I find there are many ways I need to provide care and to many people. Lynn and my daughter for their medical needs. Eli for medical and baby care.  My son for sending him off into the world with his own family.  And myself. 
Who takes care of me?  God.  He provides me with what I need, when I need it and thank goodness for it.  
PS:  All prayers are welcome!

What is a Caregiver?

I’ve had the opportunity this week to read a few blogs from other caregivers and last week to attend a caregiver support group.  In hearing the stories of other caregivers, I started thinking about what it meant to be a caregiver.  There’s certainly the obvious answer, “to give care to someone periodically or full-time,” but there is more to the story; especially if you’re a full-time caregiver to someone who is totally dependent on you due to a mental or physical condition.  Here’s my take on it….
…first, there’s the physical commitment which takes on many faces…

  • If the person cannot “do for himself” then you become his muscles and nerves; not just his hands and feet. It is through your muscles, and therefore, your strength, that he moves to change positions, to find comfort, to alleviate pain, to participate in distractions, to have his needs of daily living met, to experience the joys and challenges of life as a participant and not as a spectator. It is through your nerve endings that his body is protected from water that is too hot, sharp objects that might damage skin, body temperatures that indicate infection, bandages that are too tight, food that is too cold to be enjoyable, and other potential discomforts or enjoyments that he is beyond the ability to change but must rely upon someone to care enough to notice them and adjust as necessary for his comfort and enjoyment.
  • The flip side of using those muscles and nerves to provide for care is that you have more aches and pains than you might otherwise have. Your muscles are often strained and in spasm from lifting a body that cannot provide any support for itself.  It’s true what they say about dead weight being heavier.  A limb that cannot be lifted by the owner is heavier to lift than one that the owner can provide assistance.  Sure it weighs the same but the effort required makes it heavier.  So you get up in the morning with sore muscles and periodic spasms.  A good exercise routine would probably help that but finding the time to commit to that is a challenge (especially if you’re like me and hate to exercise!)
  • Besides the daily physical requirement, there is also the fact that you commit to their care even when you need care yourself!  Gone are the days that you could lie in bed and rest if you had a cold or migraine.  Gone are the days that you can have a GI bug and just stay in the bathroom till you are well. You have to figure out how to get help for the person you’re caring for either in-between bouts of being ill or who to call to come rescue you both. Personally, I’m probably going to have surgery soon and will have to find full-time care for Lynn before I do so.  That’s bothers me more than the thought of the surgery!

 ….Then there’s the emotional commitment or impact….Though the physical aspect is draining, the emotional impact may be even more difficult to handle.

  • Again, there’s the emotional contributions of caregiving toward the “caree.”  Part of your role includes observing the emotional thermostat of the individual. Are they depressed?  Are they becoming angry and difficult to control?  Maybe they are afraid about the future or that you will decide not to look after them anymore so they cling to you or try to “guilt” you into staying.  Someone who is chronically ill often goes through the emotional stages similar to someone dying, “denial, bargaining, anger, depression, acceptance” with a lot of going back and forth between the stages as they encounter new issues.  Guess who has to help them through those stages?  The caregiver of course,who is also likely to be going through the same stages themselves.
  • The caregiver’s emotional response is often very difficult due to self-imposed guilt over having some of the emotions we have.  Too often we think that we are “bad” to be angry or resentful about being “stuck” in a situation. We don’t want to give ourselves permission to experience the negative feelings we have.  What happens though if you don’t allow yourself to express them is that they come out anyway in response to the one being cared for or in destructive ways to yourself.  I tend to overeat if I’m depressed and I become overly negative and critical toward Lynn. It’s important to acknowledge the feelings and allow them to be expressed but in a healthy way rather than in a destructive way.  Support groups and therapy help a lot with that as well as writing a blog : )
  • You also experience the effect of constantly having that person on your mind. You have to plan ahead for meeting their needs…do they have enough supplies, when is their medication refill due, are their bills being paid on time, are their clothes okay, are their meals being prepared correctly, who is going to cover for you when you can’t come by, who will take over if something happens to you….etc. etc. etc.  

…Besides emotional and physical commitments, you also become the other person’s “window to the world.”

  • You help them remember what day it is and to celebrate the special occasions on the calendar.  Often every day is just like the last so it’s difficult for them to keep straight the season or the holiday being experienced.
  • They may not read the news or watch it on TV so helping them keep up with current events may be a way to keep them connected (personally, I do not read them either so we could have had an alien invasion and I wouldn’t know about it till someone stopped by and told me about it.)
  • You are the one who takes them out into the real world.  I admire Patrick, who writes Caregivingly Yours.  He takes his wife Patti, who has MS and is fully dependent, on multiple excursions per week.  He keeps her stimulated with new places and entertains her with new advantages to help her keep involved in life, even though her MS Dementia would make it easy for him to say they did when they didn’t.  That’s try commitment to doing what’s good for someone when it would be so easy to let it go.

Then in addition to being a “caregiver” you add MS to the picture.  I know all chronic illnesses have their special challenges but since I deal with MS, I’ll describe that impact.   MS is unpredictable.  Since any nerve pathway could be affected by the myelin degeneration, ANYTHING could go wrong. What is working fine today might not work at all tomorrow.  Someone who is functioning well in the morning may not have the ability to do anything for themselves by afternoon. A simple cold can put them in bed for a month or more and lead to new exacerbations that have long-term limitations. A period of forgetfulness might mean fatigue or the beginnings of MS dementia.  And while all these symptoms create challenges, for the most part they do not shorten life expectancy so the accumulation of new challenges goes on and on and what’s lost is rarely regained.
There is no doubt that being a caregiver is a sacrifice of one’s self.  For me, I often feel like I am an extension of Lynn and at times, even lose myself in him so that I no longer exist.  When that starts to happen I have to work to separate myself from that place; otherwise, depression sets in and I am less effective at anything. 
Overall, I feel blessed to be a caregiver.  I receive a lot of rewards from being one.  It’s the hardest job I’ve ever had to do but it’s also the most rewarding because I’m very fortunate that the person I care for, cares for me, and we share the challenges together.  Plus, he’s very grateful and I have much support from our families and friends. 
But most of call, I’m blessed because God gave me the spirit of being a caregiver so I am doing what he has given me the talent to do.  Not everyone is so lucky and for them being a caregiver is a much greater challenge.  To them I say, “do the best you can but don’t expect to be perfect and don’t beat yourself up if you don’t like it.  You’re a blessing to the one you care for and that’s enough.”
So am I.

When is a Nurse Not a Nurse? When she's a Family Caregiver.

My first career in life was as a registered nurse.  I graduated in 1978 with a diploma in nursing and obtained my BS in 1980.  I was fortunate to have a position that allowed me to learn lots of new procedures that I would teach to others so I had exposure to all types of products, procedures, and knowledge.  Though I left nursing after my first child was born to begin a new career, I kept abreast with many of the changes. I even did home health care for a while as a second job.  I fully believe that God used those experiences to prepare me for my current role as a family caregiver.
We have had a home health nurse overseeing Lynn’s wound care for several weeks now.  I was telling her last week, that we really did not need her anymore because the pressure ulcer is nearly healed.  All I had needed her for anyway was a consultation to make sure I had the supplies I needed to care for the wound.  I could not get them as a family member but I could if I asked a home health nurse to get an order for them.
It’s been a bit frustrating at times being a nurse but unable to “be” a nurse as a family member.  When Lynn was in the hospital I assisted with all his care except managing machines.  I was unfamiliar with those so I either left them alone or had someone teach me how to manage those too (not something they would usually do).  I would do my own assessments of his body and vital signs and consult with the medical team regarding what they observed.  I still do that.
When I call in to the doctor, I have already taken vital signs, I give sizes and descriptions of skin breakdown, I describe sounds or smells that indicate problems, I have “home” kits that I use to determine if infections are developing.  I do all these things and his doctor’s trust that I know when something is wrong and they listen to my recommendations.  I am truly part of his care team.  However, because I am the spouse, I cannot “order” supplies except through home health.  I cannot get reimbursed for care provided such as wound care because I’m the spouse.  The home health nurses have not once done his wound care.  I do it.  I tell them what I’m using, what I think is going on, how it’s healing, what supplies I need, and they go along with what I say.
Not so with insurance companies.
If there is a family relationship, you lose all credibility with them.  I get “stripped” of my license when I try to justify care needs.  So I’ve learned to get what I need by getting an order for home health (which is a waste of money for the insurance company since I could easily do this without them paying for a home visit). Just another problem that exists in our health care reimbursement system.
…Just like not paying for preventive care….don’t get me started on that!
There’s another time when a nurse is not a nurse when she’s a family caregiver; that’s when she tries to tell her spouse what to do.  I have so many times told Lynn he was developing a “condition” of some sort.  I would warn him that he needed to go to the doctor to get such and such.  However, he won’t go until the situation is so bad he’s in pain or can see for himself that it won’t heal alone.  I get no credit for what I know.  Yes, I’ve “told him so” a few times now and he even admits that he needs to listen to me but there’s something in his ego that just won’t let him take directions from me.
I also realize that as a family caregiver, I’ve become his enabler.  I realize that he would probably have more “abilities” to care for himself if I was not here to do so much for him. When he’s tired, he just won’t “do” for himself. He calls me.  If he was in a facility or had someone who was not family caring for him, he would likely have to do it himself or not get it done. He would not be happy and he might have long waits, but I often wonder if I’ve done him harm by always being there to help.  On the other hand, I know that if I had not been there to watch over him, he most likely would have not lived to this point because I have caught and/or prevented so many medical issues for him before they became serious.
So, my medical background is a true blessing from God.  He’s provided me with the knowledge, skills, and abilities to care for the husband He gave me.  Though He has not led me to “be” a nurse, He has led me to “be” His healing hands for Lynn.  For that I am very grateful and we are both truly blessed.

The View From Up Here

Stretched outright, Lynn stands about six-foot tall.  For the past three years; however, he has been around four-feet tall. That’s his height when he’s in his wheelchair.  Since just before he was hospitalized in 2010, he has not been able to stand up or walk.  Being restricted to a wheelchair has; therefore, changed his perspective on how he sees the world. In other words, his view of the world dropped about two feet.  This week that changed…
I may have mentioned that we were looking into buying a device that would help him stand.  Lynn has been exercising religiously since he got out of the hospital trying to regain the muscle tone he lost while “laid up” for about three months off and on in 2010.  It takes much, much longer to get it back than it does to lose it. In fact, we have heard it said that it takes a week for every day of bedrest to get back what was lost.  After many hours of exercising, he has now gotten to the point where he wants to focus his energy on possibly being able to stand independently.  He realizes he may never be able to do that, much less walk, but he also figures that if he doesn’t try, it will absolutely never happen.  Having made that decision, he went in search of a device that could help him reach that goal. He found what he was looking for in the newly released Rifton Tram (find out more at: http://www.rifton.com/adaptive-mobility-blog/tag/rifton-tram/.)
The Tram is a multi-purpose device with a low center of gravity that lifts from below rather than above.  In some ways it’s similar to a hoyer lift with the legs that widen but that’s where the similarity stops.  It has the ability to be a lift/transfer device, but it also allows you to help the person go from sitting to standing and then from standing to walking.  It’s light-weight; only weighing about 70 pounds; and rolls easily.  While no medical equipment is cheap, this one actually sells for right around $5000 depending on whether you buy the optional scale device with it as well.  The scale allows you to determine how much weight-bearing is occurring and helps with determining progress in that area.
Since the insurance company says this device is too new to demonstrate that it is truly effective in all that it claims to be able to do, they won’t pay for it.  They classified it as “experimental” when they rejected it. So, we decided to take the money out of savings.  Sure it took a big bite out of what we might have for other things but how do you put a price on hope? For Lynn, the price was $5000.  In the scope of what it might do for him, that price seems worth it.
Adaptive Solutions (http://www.myadaptivestore.com/) , the company that helped us find out about this device and purchase it, was very supportive throughout the process.  Lee Rooney, the owner, really believes in this equipment, and personally brought us the device and showed me how to use it. For him, it was a two-hour drive from Lynchburg on a Saturday to deliver it to us so that we could ave it as soon as he got it. You can see how dedicated he is to his customers.
Though the process is simple, I have to admit, it takes a lot of practice to get the straps set up to be the most effective for what we want.  Yesterday it took me four tries.  Once, the straps were too tight in the forward position causing it to lift him into a sitting position rather than standing. Two other tries had him once with his right side longer than his left and then the third time with his left side longer than his right.  Finally, I had the straps equal enough that he had almost even pressure on his toes and he was able to stand for a while. Today I got it right on the first try!  He was able to push his feet into the floor and to slightly pull back on his knees as if to lock them–both movements being necessary if he wants to stand.
One of the main reasons we got the Tram though is Lynn’s feeling of independence and normalcy.  He recalled that when he was in physical therapy, his therapist used to stand him almost upright when he transferred him.  He described how exhilarating that feeling was.  When he first stood with the Tram, it was a similar experience. “I feel so tall!” he grinned.  He explained that he had forgotten how it felt to look down on things.  He was so used to being at eye level that to look down and see objects below him made him feel like a giant.
It was a good feeling…for us both.

Warning! I have a Cold!

Yesterday we celebrated Christmas with my side of the family.  Several traveled about five hours so that we could be together. We had a wonderful time but it almost didn’t happen.
Earlier in the month I posted a blog about how difficult it was to choose between caring for Lynn and helping out my daughter who was sick and whose baby was very sick. After reading that post, my loving, self-sacrificing, 80-year-old parents jumped in their car and drove five hours to come help her out so I would stop worrying about her.  (See where I get my caregiving tendencies?)  It was such a relief to have them here so I knew Sarah could get some much-needed rest.  They kept the baby at my house, and I could help from across the room or up close if I was careful to stay away from his little contagious face.
My parents needed to get home for some things previously planned so they left early Friday morning of that week (two Friday’s ago).  A few hours after they left, my daughter sent me a text, “do you have a spare stethoscope?  I think Eli is wheezing.”  Though I didn’t have a spare, I immediately took what I had and went over to check his breathing.  In doing so, I walked into virus city but I took the risk because I was worried about the baby.  I’m glad I did because he was certainly wheezing and, in fact, ended up in the emergency department a few hours later to get breathing treatments.  I stayed away from them after that but it was too, late–the alien invader cold virus breached my armour and attacked.  I now have a horrible cold and I’m miserable…and feeling guilty and worried.
Several other members of my family had also been sick last week with colds and one developed an intestinal illness which was a totally new bug to throw into the mix. We almost postponed the family get together; but by yesterday morning, most were feeling better so we decided to have a “no touch” celebration.  Honestly, I think I was the sickest one there so I hope no one gets sick from me!  We occasionally forgot and gave a hug but for the most part, we did not touch.  Since the baby had finally gotten better, the only ones who could touch him were his parents and me (other than my parents who had no symptoms of illness and had already been exposed to him) which was disappointing for the others.  I was ill but from the baby sharing his germs so he could not be re-infected from me.
As I sit here, now, sneezing almost continuously, my biggest fear, of course, is Lynn.  I can’t help but share these germs with him.  I’ve washed my hands till they are cracked from dryness.  I put a towel over my shoulder when I have to move him to keep his face away from my clothes. I turn away when I cough and sneeze but he’s living in my germs.  I give him Zicam around the clock. However, I fear it’s just a matter of time before he is sick, too.  In fact, he said his throat was a little sore this morning and his use of nose spray has started to increase.
Everyone hates to get a cold and hates the miserable symptoms that cause sore noses, difficultly sleeping and other unattractive and inconvenient maladies.  However, for a person with MS, it carries even greater concerns.  MS is considered to be an autoimmune disease because the immune system in an MS patient is “confused.”  Where in the lives of a person who does not have an autoimmune condition, T-cells and other infection fighting agents are good guys, in a person with MS, they are traitors.  Instead of helping the body, they attack it.  Think of it this way…
Two little countries are located side by side and they hate each other with a passion.  Both countries train their soldiers to attack and destroy any soldier from the opposing country on sight.  The two country’s inhabitants have unique skin colors.  Country-A inhabitants have yellow skin and Country-B have green.  Finances are an issue one year and Country-B is low on resources.  They came up the strategy to put a blueing ingredient in the water of Country-A.  The next morning when Country-A wakes up, everyone who has had water to drink during the night has turned green.  The rest of the “yellow” inhabitants think they have been invaded and began to attack and kill the “green” invaders.  Thus they destroy themselves and the Country-B gains control.
Something similar happens in MS.  The person’s immune system senses danger and attacks itself so when a new infection is introduced, more “defenders” are produced by the body and these new defenders not only attack the invaders but also the person’s own body.  That makes the individual susceptible to having an exacerbation and developing new MS problems. 
That happened to Lynn two years ago.  He got a bladder infection that was not treated correctly. He lost his desire to eat and his body’s inefficiency to fight the infection led to him being hospitalized.  Once he was hospitalized, he developed pneumonia due to an accidental aspiration from the feeding tube he had, and between the two infections (respiratory and urinary), his body engaged in WWIII tactics which nearly cost him his life.  He has just now gotten back almost to his pre-hospitalization level but still has a way to go even now.  Before hospitalization, he had better balance, could use both hands, and had voluntary control of urination. Now he has none or limited ability in these areas.
So, it is with great concern I wait to see if my cold leads to an illness in his body.  I’m also concerned because he currently has a stage III skin breakdown on his right buttock.  Therefore, his body is already under attack trying to repair the skin damage.  I fear that adding in the defense of a cold will be over whelming. 
I’ll just have to wait and see and ask for prayers of defense.  I know if he gets sick not only will he need prayer support but so will I.  (He becomes even more needy when he doesn’t feel well and I’m already on overload from that front as it is!)
On a more pleasant note, I look forward to two more family events this coming week and one next week for New Year’s Eve if he isn’t sick. 
In closing, I wish you and your family a very MERRY CHRISTMAS and God’s blessings on your new year!

National Family Caregivers Month – Background

In 1994, the National Family Caregivers Association began promoting the celebration of family caregivers during the week of Thanksgiving. President Clinton signed the first presidential proclamation in 1997 and every president since — Democrat and Republican alike — has issued an annual proclamation appreciating family caregivers. As interest grew in family caregiving issues, National Family Caregivers Week became National Family Caregivers Month.
Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care.  Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.
NFCA coordinates National Family Caregivers Month as a time to thank, support, educate and empower family caregivers.  Celebrating Family Caregivers during NFC month enables all of us to:

  • Raise awareness of family caregiver issues
  • Celebrate the efforts of family caregivers
  • Educate family caregivers about self-identification
  • Increase support for family caregivers

“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”
 President Barack Obama, NFC Month Proclamation 2009