Donna Steigleder

As the full-time caregiver for her disabled spouse, Donna has more than 30 years of experience providing care not only to Lynn but before him, to her daughter now in her thirties. After retiring from full-time employment as a Human Resources professional in 2018, she focuses her attention on helping support the eight members of her immediate and extended family needing caregiving support daily. Between her first career as a registered nurse and her years working in the employment world, Donna developed many skills that make her successful in problem-solving and crisis management. Her greatest desire now is to put those skills to work to help relieve some of the burden caregivers face every day.

I Don't Know What I Don't Know

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Do you remember when the person you care for was first diagnosed with MS?  You might not have been around them at the time, but I remember it very well.  Those were very confusing days. I was almost sure Lynn had MS.  He didn’t want to talk about it or give the disease any power over him so he refused to acknowledge he “had” it.  He would not read about it, he would not look anything up, he didn’t want to talk about it.  As I’ve mentioned before, he feels that if you give what you have a name, then it tries to take over your life.  If you refuse to allow it to “have” you, then you still have some control.  To me, that was burying his head in the sand. I’m just the opposite.  I think the more you know, the better prepared you can be; so, I started looking up as much as I could “in secret” so I could know what to expect.
I was expecting for Lynn’s first neurological appointment after being diagnosed to be an extensive information session. I figured we would be told what to expect, treatment options, ways to improve his chances of staying healthy, …all kinds of things.  But that didn’t happen.  The doctor came in and took a medical history.  Then he did an examination.  Then he said something about relapsing remitting MS, handed us several booklets on various medications, gave us a handout on a MS study he thought might be a good option for Lynn, and asked if we had any questions???????
Questions?  I had about a million but Lynn had none.  I told myself, “this is his disease and his life.  Let him handle it like he feels he needs to.”  So I didn’t ask any questions but instead went home and read the pamphlets and started checking out information on the National MS Society website. I got an overall understanding of what MS was and some of the treatments, but it was really overwhelming.  There were so many different types and so many different symptoms.  I didn’t know what I needed to know.  Where should I start and what was essential and what was good to know or what might not ever be needed?  That’s when it would have really been nice to know someone who had MS who could have put it all in perspective but although almost everyone we talked to “knew” someone with MS, we didn’t know anyone and we didn’t want to call a stranger to talk.  I was fortunate that shortly after Lynn’s diagnosis, two people I worked with told me their mothers had MS.  That at least gave me someone to question about what was happening.
But you know what I think would have REALLY helped?  It would have really helped if our doctor had decided to treat the person who had MS instead of the symptoms the person had.  I don’t mean to imply that our doctor didn’t do a good job of treating Lynn; he did.  He’s very knowledgeable, he will answer any questions we have, he’s well-respected by his colleagues for his expertise, but unless I asked specifically for some type of referral or information, it wasn’t provided.
I’ve heard about places that have MS Centers.  I think that would be wonderful.  I think that when someone gets diagnosed with MS, they should have a complete physical workup to determine all the potential organs and functions that might be affected.  They need a counselor to discuss their fears, concerns, grief, anger, whatever they’re feeling… and so does their family, both separately and together.  They need to be started on an exercise plan specific to whatever areas of weakness may be present and their caregivers taught how to assist correctly.  There should be a dietician to talk about healthy diets FOR MS PATIENTS; not cardiac healthy eating but what foods are being found to support neuron function.  An appointment with a social worker to talk about planning ahead for applying for Medicare or Medicaid and what resources are in the area to help people with MS.  A pharmacist to talk about the abundance of prescriptions that might help or hinder the symptoms of MS specific to person.  Then wouldn’t it be awesome to have someone to pull it all together and talk about what to expect, handy hints for everyday living, how to handle (fill in the blank)? 
Why can’t a well-rounded approach be used to treat someone with a chronic condition that affects every aspect of their lives and potentially every organ of their body?  When will the medical progression get smart and realize, we don’t know what we don’t know so TELL US! Is that too much to ask?

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Patient Advocate

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Out of the blue today, Lynn asked me to write about advocacy. He said, “please stress to your readers the importance of having an advocate or being one for yourself,” so here goes.
When Lynn and I first got married, we were both VERY independent.  Both of us had been married before and both of us had learned to survive as single parents and single individuals. Therefore, unless we needed someone to drive us home after a procedure, we never accompanied one another to medical appointments. That was fine at first but then I became very frustrated with that approach because Lynn’s approach to health care is “the less I know the better” or “ignore it and it will go away.”  Mine, on the other hand, is “tell me absolutely everything, give me a copy of every medical report you receive, and where can I get more information?”  Therefore, as I began to notice more and more often, symptoms that, to me, signaled MS, I began to ask more and more, “what did your doctor say?”  The answer was always the same, “I’m fine.”
Finally after one intense discussion around this factor, I announced that the next time he went to ANY doctor, I was going, too.  I’m glad I did.  I sat silently to the side and listened as the doctor asked Lynn how he was doing.  His response, “Fine, if I was any better I could not stand myself.” Knowing that doctors do not have x-ray eyes and cannot read minds, I spoke up and said that wasn’t exactly correct. So began, my role as MS Caregiver, and patient advocate.
Initially Lynn continued to have a hands-off attitude.  He told me he didn’t want to know anything other than what he had to know to get by day by day. When I would be reading about MS or looking at something on the internet about it, he would turn his head as he walked by.  This attitude continued until his second admission to the hospital.
Lynn’s first hospital admission was pretty serious.  His body temperature dropped so low it could not have sustained his life for long.  That was due to aspiration pneumonia which occurred when he coughed up a nasogastric tube through which he was getting a tubefeeding and the feeding went into his lungs. He was actually too sick during this admission to participate in his own decision-making so I stayed with him 24/7 and did it for him.  I was present whenever the medical team visited and I asked hundreds of questions to make sure I understood what was going on and what it all meant.
Then on his second hospital admission, he learned for himself that he needed to speak up on his own behalf.  Lynn’s diaphragm was weak; whether from an MS exacerbation or the intrathecal baclofen dose being too high and making the muscle weak. There was a period where I expected him to be put on a ventilator at any moment.  Thanks to prayer and a good medical team, we avoided that but when he became more alert, he started taking a more active role in the decision-making.  He was convinced he was NOT having an exacerbation so he refused the IV steroids.  There was one doctor in particular who kept insisting he had to go on steroids and he flatly refused to do so.  He insisted the baclofen dosage be adjusted and that, along with some aggressive pulmonary care, helped him to overcome the respiratory depression he was having and be able to leave the hospital. 
During that admission, he had difficulty talking because he had limited oxygen and had to wear an oxygen face mask all the time.  Often the doctors would assume he was going to go along with what they wanted and would not wait to hear him out.  However, I learned to read his signals and would at times, block the doorway and say, “he wants to say something to you, listen.”  They would apologize and indeed listen.  Sometimes they just get too busy to slow down and listen to the patient and you have to force the issue.
That’s what patient advocacy is all about…making sure your opinions are known and heard.  Healthcare professionals can be intimidating.  They are trained to be very confident in their decisions and in deciding what is best for someone; they have to be so that they will have the courage to do what has to be done. However, sometimes they have a hard time turning that off.  That’s when you have to speak up.  You know your own body and how your body reacts to situations.  In much the same way, you know the body and the reactions of the person you care for. 
As a caregiver, you can often spot changes that even the patient doesn’t notice.  I’ve intervened in Lynn’s care several times and having done so, prevent a great deal of pain and suffering for him. You won’t always know the answers but listen to your gut instinct when you feel something’s wrong. 
…and be a pest if that’s what it takes.  Don’t be abrasive or rude; that will backfire.  No one likes to be bullied or threatened so don’t go there but be persistent.  Keep asking for an explanation and pointing out discrepancies until you’re satisfied that what you know is being considered. I’m not saying to always disagree with the medical team or to insist for the sake of insisting, but just make sure you’re heard and your opinion is considered.  Get a second or third opinion if necessary, but always look out for your loved one like a mother bear watches over her cubs.  It’s just one more essential role of being a caregiver.

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Keeping up with the Paper Work

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If you are a full-time caregiver, or even part-time but the primary person responsible for someone else’s care, then you know all about paper work.  It’s another one of the unpleasant aspects of caregiving that we have to endure but are all too often unprepared for or unfamiliar with.  I’m very fortunate in that I have a healthcare background.  I understand the reason behind all that information “they” gather and why it has to be reviewed every visit.  I also know about insurance to a limited degree but more about that from personal experience than professional.  All that being true; however, it still is difficult to keep up with all the paper (virtual or hardcopy) and still quite frustrating at times.
One of the things I did early in my caregiving “career” was to get a journal where I recorded all the events that happened in Lynn’s medical journey.  I wrote down every doctor’s appointment, who he saw and for what and any changes to his medical regime.  That has come in very handy when one of his many specialists asks me when something happened.  Lynn has a mind for dates and events and can tell you right down to the exact date, and often the day of the week, when something happened…and he’s rarely wrong. Me, I can’t remember if my wedding anniversary is on October 10th or the 11th.  When asked when something happened, I can give a general time frame (such as, when the kids were in grade school, high school, or college; before or after we were married…) but I do NOT remember dates; therefore, I have to write them down. 
I also try to keep a running list of all his medications on my computer.  I update it with any change and make sure it’s accurate before any medical appointment.  I update the “current as of” date and always take it with me to give to the doctor.  This saves time when the doctor or nurse is doing a “medication reconciliation” which is a Joint Commission requirement for hospitals and physician practices to be accreditated.
Knowing how important and helpful this information can be, I readily agreed when I was contacted by Tory Zellick to review an advanced copy of her book, “The Medical Day Planner: The Guide to Help Navigate the Medical Maze.”  Tory, herself was one of the caregivers for her mother, who had a six-year struggle with cancer which she was unsuccessful in winning. This book arose from Tory’s struggle to help organize her mother’s care and help everyone who participated in the caregiving to stay up to date. Maybe, if you are the sole caregiver, you would not find it as helpful as those who have multiple people helping out, but I think that even if you are the primary caregiver, you would find this Medical Planner to be a handy tool to help keep all the essential information about your loved one in one place. 
The book is well-organized, sectioned into categories of responsiblity like medications, appointments, important phone numbers, etc. Within each section are worksheets for recording pertinent information on that topic as well as narratives related to the information being gathered.  The narratives are basic and to the point, written in a common-sense approach without too much formal interpretation–just what she found she needed to understand to be able to accurately understand the information needed.
The Medical Day Planner is a spiral notebook type presentation but hard cover so it’s durable.  My only constructive criticism, which isn’t a criticism at all but a personal preference, is that I would have preferred it be in a three-ring binder instead of a spiral binding so the 52-week planner at the end could be replaced annually with new sheets.  Being in a spiral binder, it renders the planner limited to one year and as we all know, if you’re caring for someone with MS, you’re looking at years instead of weeks of caregiving. Therefore, that section is not as useful to me but the rest of the Planner is excellent.  It would also have been helpful to have a “pocket” inside the back or front cover to insert documents that you might want to take with you to appointments.
I’m not sure when the book will be available for purchase but you can check it out further if you are interested by checking out her website, http://allthingscaregiver.com/.  The advanced copy I received also had a sticker that states, “for wholesale information contact, Michele Farrington – mfarrington@tuttlepublishing.com.  It’s worth taking a look to see if you might find it helpful.
Thanks, Tory, for sharing what you learned and for letting me review your work. 
Good luck,
Donna

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Why is Getting Help so Hard to do?

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Ever since Lynn became totally disabled, I’ve had lots of encouragement to get some help.  I know I need help.  My muscles hurt from over use; I get frustrated trying to do everything I need to do; I know that there is a high risk as a caregiver that I will have a shorter lifespan.  So why don’t I just get some help?
I’ve heard from several of you the answer to that question because you have already struggled to make that decision and you encourage me to do the right thing for both myself and Lynn. So why don’t I just get some help?
Protection – Just like a mother lion protects her cub, we caregivers protect the person we give care to.  There is usually a connection with the person both of emotion and responsibility.  As a spouse, I love Lynn and want his every need to be met to his satisfaction, if possible.  As his spouse, I promised to love, honor, and obey in sickness and in health, etc. so I also feel a sense of responsibility.  Rationally, I know that promise does not mean I have to provide the care but there is a commitment and emotional piece that leads me to want to put his needs first before my own.  I also know that I know him better than anyone; what he likes, how he likes it, when he likes it, etc.  I know that any caregiver we hired would not likely be as attentive to him as I am.  Would that person catch signs of distress or illness soon enough to prevent more harm? Lots of “what ifs?”
Selfishness – This is a bazaar one but selfishly I like being recognized for how well I care for him.  Pretty sick, right?  I like to hear compliments about how well he’s cared for and to feel appreciation from family members for “my sacrifices.”  I also have somewhat of a martyr complex for some sick reason.  I find self-worth in sacrificing for others so there is some secondary gain in what I do as well.  Plus I rather like working from home in scrubs rather than putting on makeup and going into work (at least some of the time anyway.)
Financial – This is a big one.  Lynn gets basic social security benefits–hardly more than he took home every two weeks–so my salary is the primary salary.  I make a good salary for the work I do so I’m very blessed in that respect but I’ve run up a lot of credit card bills buying things to make our life easier, medicines, supplies, nutritional supplements, equipment, etc.  All that stuff is expensive and I also had children getting married, unemployed and needing help, going to college, etc.  All that cost adds up.  I don’t have spare money that could cover much in the way of daily care.  I know I need to carve out some income in that direction and over the last year, I’ve managed to pay off some of those bills but buying the wheelchair accessible van and saving to build a new house doesn’t leave much to use. Another consideration is that insurance doesn’t pay for home caregiving, plus I live in a very rural area so resources are limited. 
Lynn’s insecurities – He’s afraid for me to not be here.  He knows that I’ve “saved his life” several times by noticing changes in this condition and getting the help he needed sooner than later.  He knows I will find ways to make what he needs happen and quite frankly, the thought of having a stranger around all the time is not a welcome thought.  What do you do with a paid caregiver when Lynn doesn’t need anything at the time? Do they sit in the room with him and watch TV?  That’s like having a guest around all the time and we’re just not that used to having company.
Then there’s the safety issue.  Criminal background checks, how well does the caregiver know their job, do they lift safely, will they be patient and nice or mean and abusing? 
So much to consider….It’s not easy to take that step even when you know it’s something you really need to do.  I’m getting closer but I’m still not there yet…but it’s only a matter of time.  Pray for me that I’ll get there and find a way to make it work.  Thanks for all the words of encouragement and support.  It really helps.

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Free to a Good Home…with patience

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Lynn has started a new MS medication–at least new for him.  It’s Rebif, an interferon beta-1a therapy that is supposed to slow disease progression, reduce the development of lesions, and reduce exacerbation occurrences.  Sounds like a good drug but it’s also used primarily for relapsing-remitting forms of MS and Lynn maybe into secondary progression now, so we’ll see… What I do like about it is that he only gets it three times a week instead of every day.  That’s a nice difference from Copaxone.
Now, for the other side of the coin and why I want to give HIM away to a good home! Due to the side-effects of the medication, the dosage is titrated upward (i.e., gradually increased over time so that the body has time to adjust to it before increasing the dosage). He just finished the 8.8 mcg dose and will begin the 22 mcg dose tonight. So far side-effects for the flu-like symptoms have been minimal.  However, Lynn is VERY sensitive to any change in medication routine and he’s been feeling miserable all week.
Primarily he has been feeling tired and irritable…nothing seems to make him comfortable.  He has a brief period when he first wakes up in the morning when he feels half-human but by the time he takes his morning medications, completes his morning bathroom routine, and does a few exercises, he’s “done in.” He then has nothing left for the day.  I put him on his peddler and start the process of my dual life.  I work maybe 15 minutes, then, “Hey, sweetie,” is heard from down the hall, and I go (pick one or more: give him nose spray, get him cold water or hot tea, adjust his clothing, fix the peddler, scratch an itch, change the TV channel, help him with the computer, …).  He just can’t get comfortable.
Then there’s the irritability…  I have a baby monitor that sits beside my work computer so I can hear what he needs.  His “comments” generally indicate a great deal of frustration.  I know he has absolutely no patience right now and I usually get a string of commands/requests rather than one or two.  He apologizes all day because he hates to be this way but he’s so miserable he just can’t help it.
He has also gotten depressed.  That is one of the major side-effects of this drug.  In fact, it can lead to suicide.  He’s not there or even close but he was nearly in tears this afternoon talking about being afraid.  Whenever he starts feeling this bad, he becomes afraid that it won’t end…that life going forward will always be this way.  That’s pretty common for anyone who feels bad but I especially think it’s difficult for those with a medical condition that often DOES get worse and stay bad.  He used to not share these concerns with me but he’s learned that if he does, I can usually help him see that there is a temporary reason for why he feels so lousy.  I expect though that he may need a lot more support while on this medication and maybe even an increase in the anti-depressant he’s on.  I’ll keep a close watch out for how he is doing for sure.
The hard part for me now is that I’m so conflicted.  My job needs my attention more these days.  My daughter’s baby is due June 3 and I’m planning a baby shower for her on April 28…that’s fun but it also takes time and a lot of work to put it together.  (it’s not so much work if you don’t already have too much to do but in my small world right now, ANYTHING extra, good or bad, is a lot of work!) I want to be there for him but he’s wearing me out.  Last night I had to get up to either cath him or help him get comfortable literally every hour and a half.   I’ve been miserable myself all day (I did take a nap for an hour this afternoon so that helped a great deal).
He’s napping right now so that’s why I have time to write this.  I dread the next two months as his medication titrates upward and he will most likely get more side-effects. I really pray (literally) that the medication will help him and that his system will adapt soon.
If any of you use or have a family member who uses Rebif, can you let me know how long it takes for the side-effects to settle and become manageable?  Thanks

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Going to the Movies

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I have always enjoyed a good movie. It’s one of the things I miss about not being able to get out and go places now.  However, you don’t have to go out to see a movie any more; you can now do it in the comfort on your own home and with the benefit of a “pause” button. 
What would we do without “pause”?  We rented from “the big red box” a movie called, “We Bought a Zoo.”  Fantastic movie!  I highly recommend it.  So after I gave Lynn his shower, got him dressed, took my own shower (which I find necessary every time I give him one), got him settled with his peddler, and gave him his afternoon meds, I put the DVD in to watch. 
About 10 minutes into the movie, I paused to cath him and fix him some tea.  About 20 minutes later, his foot was hitting his wheelchair so I had to fix that (didn’t pause that time), ten minutes after that, he needed nose spray.  I settled back on the bed for about thirty minutes and it’s “pause time” again for another cath.  Clean everything up and back to the movie.  A few minutes later, he needs his arm scratched.  Ten-fifteen minutes later, his foot hurts and his socks need to be pulled up.  (This one takes a pause.)  Got him settled, restarted the movie, and he needed nose spray again (he has chronic sinusitis).  Then another cath (yes that’s three in the space of what should have been a two-hour or so movie.  Ah, yes more tea is needed too. 
I lost count of how many times I was interrupted during the movie.  Seems like at least every 10-15 minutes.  I used to think the kids were tough to watch a movie with.  I think Lynn wins the contest as to who needs more attention.  It’s not always like this but it often is at night.  Late evenings are always bad and this past week has been significantly so.  He just started Rebif so he’s having to get used to that.  His dietician started him on some new supplements that help with removing bad stuff and rebuilding good stuff.  The pollen is heavy which always takes a major toll on his energy level.  So it’s been a hard week for him and it doesn’t seem to be getting any better.
But with all the pauses and the interruptions, we managed to go to the movies and we both really enjoyed it.  Certainly isn’t something we could do at a theater (can you image how irritated our “seat mates” would have been if I had gotten up to help comfort Lynn that often?)  But we adapt to our limitations and we find ways to have fun and get entertained.  Our Friday night date was different but enjoyable for us both.  Hey, and if you haven’t seen that movie yet, it’s a really good “feel good” movie.  I recommend it!

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Multitasking

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When I was trying to decide what to write about this week, I was having a hard time coming up with something unique.  I’ve touched on many of the hardships and challenges associated with being a caregiver but as I look out the window at all the new growth for spring, I am also thinking of all the benefits.
Some of the challenges we ensure also have benefits associated with them.  I realized early in my life of caregiving, actually when I was acting as both a Mom and caregiver for my child who had a chronic health condition too, that God prepares us for the challenges ahead without our realizing it.  It seems in looking back that each difficult road I’ve traveled helped prepare me for something ahead that would have been more difficult if not for the previous experience.  For myself, I find that God led me in a very unique way to prepare for where I need to be now. 
I originally trained to be a nurse.  My first nursing position was evening shift and I worked “the house” training other nurses in new procedures and helping out in all crisis events.  I learned a lot of skills, both nursing and interpersonal.  When my first child was born, my husband at that time wasn’t coping very well with being the one responsible for her care while I worked so I sought a day shift position.  I became trained in Infection Control, Employee Health, and eventually was the Director of Education and Training.  From there, I was asked to train in Human Resources so I could take over that department (this was obviously a small hospital).  I eventually stayed in the area of Human Resources but moved to another hospital and focused on Employee Relations and development of policies.  My role was primarily advisory in nature (over the phone or email consultations) and I learned the role technology could play in communication. 
As you can see, my nursing and HR training, as well as experience in use of technology put me in a position to be able to work from home so that I could provide care for my husband.  I can now consult with contacts by phone or email while I’m simultaneously assisting Lynn.  My job with my company is no longer 8:30 a.m. – 6:00 p.m. but is now 24/7 (24 hours/day seven days a week).  By working from home I access my emails and continue to work on projects between the times Lynn needs my assistance.  I’m a 24/7 employee and a 24/7 caregiver.  When you speak of multitasking…I’m the Queen!
I can be directing the action plan for a crisis while I am cooking spinach for Lynn’s diet and giving him his breakfast, all at the same time.  In fact, I would say it’s pretty rare that I focus on one thing at a time.  I expect that is true for all caregivers.  Multitasking is a talent each of us has to develop in order to get everything done that we need to do. We each need more than 24-hours in a day but God in his wisdom realized that if he gave us any more, we would never get any rest!  I know if I had more time, I would just fill it up with more tasks.
Though multitasking is a requirement for being a caregiver, it’s also a blessing we have been provided.  It allows us to manage our lives and the lives of those to whom we provide care.  It makes us better employees and more talented workers.  We develop greater skill and stronger personalities.  The only down side is we tend to try to do too much at any one time and we forget to take time for ourselves.
I guess every challenge has a benefit if we seek it.  Sometimes we just have to look a little deeper to find it.

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The Secret Life of a Caregiver

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 I follow the writings of another caregiver, Patrick, (http://caregivinglyyours.blogspot.com) who has been caring for his wife who has MS for 22 years.  Patrick recently discovered he had cancer and one of the comments he made in his blog struck home with me.  Patrick described how he hid the truth of his illness from his wife so that she would not become upset over the news. When I read that, I wanted to reach out and give him a hug and say, “I know.”
Who, as a caregiver, has not been in the position of putting on a smile to hide the true emotions they are feeling?  I have been very fortunate (so far) that I have not had any serious illness to hide, but I have learned that I must be careful what I share. I remember coming home from a medical appointment where my healthcare provider warned me that if I didn’t get some sleep, I was likely to become very ill…and then who would care for Lynn?  More than a concern about my own health, I started taking measures to address the warning so that I would be around to care for him. 
I admit though, I told Lynn what the doctor said.  He initially took it in and encouraged me to follow the doctor’s advise.  Then I started noticing that depression was setting in for him.  He would be on the verge of tears and he was constantly asking me how I was feeling.  I realized that while I felt responsible for him, he felt guilty for the potential harm he was causing me and he was having a very difficult time dealing with it.
In the spirit of full disclosure, I will share that I am sometimes evil.  Sometimes I am so tired of being tired and I’m hurting all over from muscle strain and the burden of doing everything, and I just want to escape…then he calls, “hey, sweetie!” to scratch an itch for the 10th time in an hour or to adjust his clothing…AGAIN… or something else he needs when I’m in the middle of trying to get something done that REALLY needs to be done.  I admit in that moment, I want to make him feel guilty so that he stops needing me so much.  I tell myself that he doesn’t really need that much attention or that he just wants my company so he’s making up reasons to call me, or he’s just being plan unreasonable and impatient…. I’m angry and resentful of the situation so I say something that I think will make him feel sorry for me.  I hope you all will not think too badly of me but at those times, I’m evil and mean.  I don’t like myself after that and when I see I stuck home with what I said to him and he’s feeling guilty then I feel awful and try to make it up to him…but I admit, it happens…especially at night when I’m tired.  It’s embarrassing and I feel guilty that I’m so petty but it’s true unfortunately.
I’ve found that I have many secrets as a caregiver.  I keep my fears a secret (when will he get worse, what do I do about a caregiver, how can I manage repairs, etc.)  I keep my desires secret (I want to escape, I don’t want our life to be this hard, I don’t want to move one day)  I keep concerns about my health a secret (are those just stress palpitations? do I need surgery on my thumb joints?) I keep my “bad” self secret–my grouchiness, my frustrations, my resentment at times.  
I keep all these things secret because I don’t want to hurt Lynn.  Some of it he knows by observation and experience anyway (especially my grouchy nature)  and sometimes I share just enough to prepare him for what may come but not so much as to drive him into a depression.  It’s tough being the strong one though.  Sometimes you just want someone else to carry the burden awhile.  That’s why I wanted to give Patrick a hug and say, “I know.” 
To Patrick:
I’m praying for you, Patrick and wish you the very best. I’m so glad the surgery was successful and you dodged the bullet, but right now, it’s time for someone else to care for the caregiver.  God Bless.

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Short Trip but Major Planning

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If you are a caregiver for someone who is totally dependent on you for everything, you know that there is no such thing as a “quick run” into anywhere when you take the person you are caring for with you.  Today, Lynn and I had an appointment with an attorney to sign our wills, power of attorney, and medical decision maker documents.  The location was approximately 35 minutes from our home so I estimated we would be gone two maybe two and a half hours.  I also planned to stop at the post-office, return something to the drug store, and stop at the bank.  Here’s how it went…..
The appointment was for 10:30 a.m. so we got up at 7:00 to get ready.  After cathing Lynn and arranging things within his reach, I went to put on clothes and prepare his morning supplements.  Then I returned to unstrap him from his peddlar, put on shoes, etc. and return to the kitchen where he took his supplements and exercised while I ate breakfast.  Then it’s into the bathroom for his morning routine, and to bed to rest while I checked messages at work between answering his calls for assistance.  Then getting him up, dressed, situated into his wheelchair, and groomed for the trip. As he’s waiting, I assemble his “bag” of supplies to go out….saline nose drops, Valium for spasticity, his cell phone, cold water with a straw, a smoothie for a snack, supplies for up to four catheterizations, getting what I needed for the post office, taking it to the van, cathing him one last time, getting the van ready,  securing him into the van and locking up the house. 
Then we’re off to the attorney’s office.  Almost there and he needs to be cathed.  Pull over and take care of that (if you’ve never cathed someone who is in a wheelchair while they’re in a van, you don’t know what you’re missing).  We get to the lawyer’s office, I find a place to park in the shade (it was supposed to be near 80 today) and go in to say, “we’re here.”  Lynn can’t go in because the building is not handicap accessible for wheelchairs (as we found out the hard way the last trip when his wheelchair got stuck in loose rocks when he drove off the sidewalk trying to maneuver around bumpers of cars).  Our lawyer is very nice and he gets everything ready and brings the papers and witnesses to Lynn in the van.  All’s well and we leave.
Next stop is the drugstore.  He stays in the car and I run in to return a mobility table that was supposed to be able to attach to his wheelchair which didn’t.  Fortunately that was a five-minute stop.  Back to the van and he needs to be cathed again but where we are is too public.  I’m craving caffeine so we go to Starbucks where I can park away from viewing eyes.  Another “in van” catheter experience.  Then coffee for me and tea for him after I help him get his smoothie for a snack and strap him in again so we can move on to our next stop. 
The next stop is the bank back near our house.  He needs to get out this time because we are setting up a new account by closing his business account.  That takes about 20 minutes plus we got a safe deposit box for the wills.  The bank was easy to access except doors had to be held for him to drive the wheelchair though since there were no automatic openers.   Back to the van, strap him back in again, and he needs to be cathed again.  I need spinach at Foodlion so we go to the far end of that parking lot, I cath him, again, run inside and return to realize the post office, which is our final stop, would be closed now for lunch. No matter, Lynn is exhausted by now and so we head home for me to feed him and hook him up to his peddlar to help him relax. 
I unload the car, set everything back up for his easy reach, run to the post office alone (which I must say is much easier and quicker alone) and get back in time to, yes, cath him again.  By now it’s 2:30 and I’m ready to begin my day at work….
It’s great to be able to get out of the house now using our van which makes the option to go places actually a possibility.  However, travel is no easy matter.  Supplies must be taken, nourishment must be considered, and comfort must be planned for.  Much like taking a small child somewhere, travel takes significant planning but somehow taking someone who is 6 ft tall and weighs close to 200 lbs is a bit more complicated than taking a 25 pound infant….

Short Trip but Major Planning Read More »

Grieving over things lost

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I thought I was beyond grieving about how things had changed. …or maybe we are never completely finished grieving over loss.  It seems to come back when you’re not expecting it which in many ways makes it harder to handle.
Here’s what brought it on this week.  Every morning as I’m preparing Lynn’s morning medications and nutritional supplements, he listens to his Bible lesson for the morning and then he plays a few songs off YouTube. He loves music.  He is a very talented musician and has a beautiful tenor voice.  Besides the fact that he can no longer play his guitars or hold drum sticks, he also can no longer sing.  His diaphragm muscles are too weak to sustain the slow release of oxygen needed to sing without having too many “breaks” in the lyrics. 
One of his daily exercises is to sing a little trying to strengthen those muscles.  I usually am not in the room when he sings and since he can’t sing very loudly (you need breath to project) I usually don’t hear him.  This week, however, I came into the room as he was singing along with Elton John’s, “I Guess that’s Why They Call it the Blues.”  I like the song as well, so I came into the room singing along.  As I was unhooking him from the peddlar so he could come into the kitchen to eat, we were singing along together.  I could just hear the sound of his former voice.  (Even as I write this, I have tears in my eyes and feel like crying.)  He could not sing a full verse and he would have to “cut out” at the highest notes, but the voice was still there. 
I miss that voice.
I think it was Lynn’s musical talents that made me fall in love with him in the first place.  I’m a sucker for a ballad singer…especially one who plays guitar. Plus he used to write me songs for special occasions that were beautiful.  He even wrote one for me that he sang at our wedding. (everyone say ahhhh…..)  For me, that was my most romantic part of our marriage and relationship. 
That’s pretty much gone now and I miss it.
I miss those times when we used to sing together with old songs on the radio. I miss when he used to surprise me with songs for special occasions.  I miss being in choir with him and practicing our parts as we drove somewhere.  I miss hearing his solos at church.  His voice could touch your soul it was so sweet.  I really miss it and I’m grieving that loss today.
I hope that it will return one day but I don’t expect it to.  During one of his hospitalizations, I was told his loss of lung capacity was significant and would likely decline further over time.  He’s much better now than he was but I also know that anything that affects his lungs could create a crisis for him.  Practicing singing will help make that more difficult but it won’t prevent it.
I guess the other part I miss is the intimacy that his singing gave us.  Our hearts connected during those times.  We can no longer be physically intimate and though we are closer now than we ever have been, the relationship is different when the husband has to have all his care provided by his wife.  The man wants so much to care for his wife, to protect her, to do for her and make her life better.  It’s the essence of being the husband.  When the wife becomes the protector, the provider, the one who cares for and does for both of them, it changes that relationship.  It’s still a good relationship but it’s different.  I miss my protector and I miss the romance.
I don’t know why I’m feeling this way all of a sudden.  I just got caught off guard by his singing…nothing else….but then I guess that is how grief is.  You think you’re okay and it sneaks up on you even as time goes by.  It’s just one more aspect of MS (or any life changing illness or injury) that we all live with…saying goodbye to what was and accepting what is.

Grieving over things lost Read More »

Life Changes

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I’m going to be a grandma for the first time in June!  My daughter is having a little boy and I’ve been more than a little excited since the first moment I heard the news (which was about two days after she knew she was pregnant). She and her husband are going to make great parents and I’m fortunate that they are not that far away so I’ll be able to see them fairly often (I hope).
I’ve thought a lot about this new baby entering into our family.  I day-dream about babysitting and playing with him.  I want to go to their home for his birthday parties, attend his school functions…all the things grandparents love to do.  Then there’s this part of me that thinks about the reality of my ability to do that.  I expect I can babysit here just fine but Lynn can’t get into their house so  I couldn’t go to his birthday parties unless they were somewhere accessible or Lynn didn’t go.  I also wonder as I look ahead, when the little guy actually starts school, what shape will Lynn be in by then.  That’s five years away.  Thinking back five years ago, Lynn was still working and totally independent.  What if the next five years has the same decline of the past five? ….I can’t even go there.
So instead, I’m going to think positively.  I know that there will be grandma time.  I also know that Lynn wants some grandpa time so we’re thinking about getting him one of those things you strap on to hold the baby so he can safely cuddle him, too.  Oh, probably he could not tolerate much time actually holding or playing with the baby but we’ll find a way for him to participate. I already have visions of the two of them racing down the hallway in Lynn’s powerchair!
That’s not our only life change coming up.  Lynn’s son is getting married in November!  Our kids are all great at finding ways to include Lynn so he can fully be a part of their lives.  For instance, Lynn had secretly hoped that his son would ask him to be his best man but he was not going to say anything about it to him because he didn’t want to put any pressure on him.  It’s their wedding and we want them to celebrate as they see fit.  But he didn’t need to worry, he’s going to be the best man.  We’ve been laughing about me getting him dressed in a tux and this should be something to see.  Maybe a youtube moment that would go viral?
The wedding is at 2 pm, early enough that hopefully Lynn won’t have gotten worn out by then and late enough for me to make sure he’s had all his essential daily activities completed in plenty of time.  The other factor is the rehearsal dinner…you know the groom’s family does that.  My concern, though not shared with them, was that between the rehearsal and the dinner, Lynn would become so worn out that he would be barely able to function the next day.  Well, they solved that problem for us.  We’re having a rehearsal luncheon instead.  Everyone will come to our house, I’ll fix something we can serve buffet style and that can be fixed in advance and when he gets tired, he can rest.  I’m hoping he can do the lunch thing, ly down for a while and then go to rehearsal, come home and rest for the remainder of the night and be refreshed for the wedding.
So we have major life changes happening in our family.  I’m excited about them all but as is true for anything, it has it challenges.  When a family member has MS, special consideration and long-range planning is needed. You hear the news, get excited, and then at almost the same time, start thinking about what changes will be needed so that the MS won’t get in the way.  The important thing is to make sure it doesn’t stop you or anyone else in the family from participating and enjoying the new events.  It would be easier in some ways to just “sit this one out” but we intend to keep our lives as normal as possible and to participate in whatever we can whenever we can… and so far it’s working.  I hope the same is working for you and yours.

Life Changes Read More »

Hope or Reality?

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It is Lynn’s belief that if he accepts that he has MS then he is allowing MS to “have” him. He says that he has seen enough people who we struggling along, maybe feeling bad, but still going along until they find out they have a serious condition.  Then as soon as they accept that they have cancer or heart disease or whatever, they give into it and no longer push through it. So what he tells people is that he was diagnosed with MS but that he refuses to accept that he has MS.
Though I understand what he’s saying, I don’t buy it myself.  I’m the type who wants to know as much as I can so I can take control of my options.  I want to choose what I do and when I do it. I want to plan for my future.  I’m a realist. I want to know, within reason, what to expect, good or bad.  I know that knowing can sometimes have a “self-fulfilling prophesy”  component to it but I think that knowing doesn’t mean you have to just accept that nothing can be done but instead it allows you to make intelligent decisions.
When we are expecting test results that may not be good, Lynn usually tells the doctor to tell me the details and he tells me to just take care of it because he doesn’t want to know.  I’ve found that’s not entirely true.  The reality is that he has to ease into the knowledge. He’s more like the person who s-l-o-w-l-y peels off the bandage while I’m the one who ripes it off, sees stars for a moment, and then takes a deep breath and moves on. 
This difference in how we view life and the future has us at odds at times.  For instance, before he found out he had MS, we bought land to build a house.  He wanted to do it all himself so for about five years, he designed the house, researched materials, and found someone to draw the detailed plans.  Then he began to build the house.  We currently have a complete foundation that has been sitting there untouched for 2-3 years.  Last summer, he decided we were going to find subcontractors to start back to work on it.  He has not made much progress on that decision other than he has selected a builder and has some contractors selected and he’s re-designing the house to adapt to being in a wheelchair.
He has changed the design of the master bathroom to make it easier to shower.  He’s figuring out how to put a floor to second-landing ramp in the living room so he can drive his wheelchair to the two lofts that will be at either end of the open living space.  He continues to work on the new home, planning for the future.  He’s looking forward to the day he can oversee it being built and moving in.  He even still wants to add a pond in the back so he can fish….
Me, other the other hand–I’m thinking, “yeah right.”   I have no true belief that we will ever move into that house.  In fact, right now, I can’t say that I even want to.  The house we live in now is wheelchair accessible.  My daughter and son-in-law live ten minutes away.  I have a good neighbor I can call on to look out for the place if I’m away.  It could certainly be designed better for us but if we moved, I would have so much work to do to get the house ready to sell and I had rather burn it down than try to pack everything we have in it! (not really but it will truly be a nightmare to pack up)
If I share that with Lynn, however, then it’s the same as if I’m saying he will never get better.  He works out every day and pushes every day to get stronger so that he may someday be able to walk again.  I have to be so careful with what I say so that I don’t take that hope away from him….but I’m afraid to hope. I know how MS works, especially when it gets to this stage.  It doesn’t go away.  I occasionally hear stories of people who were in wheelchairs who walk again but I’m afraid to hope that that will be him because I don’t want to be disappointed when/if it doesn’t happen.  But I don’t want to stop him from hoping or trying either.  He needs that hope.  He needs something to work toward….and it could happen, couldn’t it?
What if he’s right?  What if the only reason he is unable to do anything for himself is just because he needs to build more strength? What if there is not permanent damage but instead what we see is his de-conditioning from all the set-backs he has had?  What if this new diet continues to make him feel better and by feeling better, he can do more and by doing more, he gets stronger and by getting stronger, he regains his ability to walk?  It could happen, couldn’t it?  If it did, then my reality would totally change and I would be willing to move and pack and whatever else was necessary to start a new life in a new home.
So what do we do?  Hope or live in reality?  I guess I promote hope for him with a strong dose of reality for me.  I still need to plan for “what if” and I still need to make sure his needs, as they are now, are met.  He can hope but I need reality to cope….that’s just the way it is….

Hope or Reality? Read More »

MS Connection Site correction

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Last week I mentioned that the MS society had established a new site to help connect individuals interested in MS. I did not realize at the time that I was using a test site and I gave you the wrong web address.  The site is now open for business at  http://www.msconnection.org.  I hope you will check it out.  There is a discussion group for MS Families called “Care and Support” that can be used to ask questions and get advise from others.   I’ve posted some of my most recent blogs to the site as well.  I think just over 300 individuals were invited to participate in getting the site started before it’s opening day so there is already a lot of content there and should be more as others join in.  I hope you too will take advantage of this opportunity to connect to others.

MS Connection Site correction Read More »

Connect the Dots

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When I was a child, I loved working pencil and paper puzzles. You know the ones I’m talking about?  There were dots, numbers, or letters on a page and as you connected the dots, a picture emerged.  What I did not realize at the time was that doing those pictures was actually very educational.  I learned hand and eye coordination.  For the number and letter ones, I practiced adding or learning my alphabet.  The older I got, the better I got of course but I always loved doing those.
I also liked the mazes.  Sometimes I would cheat (start at the end and work to the beginning) but most of the time I liked thinking ahead, planning my approach and seeing if I could find the best route. 
Life reminds me of those puzzles.  Sometimes I feel like I’m connecting the dots and following the steps in a logical manner.  Other times, it’s like I’m lost in a maze.  I go along fine for a while and then “bump” I run into a wall and have to back up and find a new route.  Doesn’t that sound like life as a caregiver?
When Lynn was first diagnosed with MS, I used my connections at work to start down our path.  I work in a rather large medical center and I know lots of people throughout the center.  I had accompanied Lynn to his cardiologist’s appointment (Lynn also has mitral valve prolapse) and his doctor was asking how he was doing.  I told him that I though his heart was fine but something was wrong with his back.  He asked me who I wanted Lynn to see, I gave him a name, and he got me (Lynn) an appointment. From there we worked our way to a neurologist who was conducting an MS study and he became Lynn’s MS doctor.
Though participation in the MS study, we became friendly with the study nurse.  As I was sharing my concern about how Lynn was feeling and that I though it might be diet related, she suggested a dietician her husband had used.  This dietician had a great interest in MS and she’s the one who found the MS diet that Terry Wahls developed which seems to be making Lynn feel better.
Not everything along this path was a “connect the dots” puzzle. The journey to deal with his severe spasticity was more like a maze.  We tried baclofen tablets until the dose was so high it was obvious that it would not work even with other medications added to make it stronger.  We tried a chiropractor which helped his back but not his muscle spasms.  He tried massage but it released so many toxins in his body that he felt worse.  Then there was acupuncture which for him only caused the spasms to get stronger.  Finally we resorted to a baclofen pump implant so the dose went directly into the spinal fluid. That fixed his legs but now he’s struggling with his arm being tight as a drum. So we turned another corner and tried botox to paralyze the muscle temporarily which worked well for the first few doses but not as good for the last two.  So we back up into the maze and are trying exercise and stretching and next week will try massage again.  So far we have not found the right path in this maze.
But through our MS experience, we have made great connections.  We have some wonderful medical professionals that support us and who truly work to research solutions to his problems.  Our church has been awesome….so many people who hear about our needs and who support us in prayer, donations, assistance of all types.  Our struggles have brought us closer to each other and to our families who stay connected to us now more than ever so they can assist us in whatever we need.
One of the best connections I’ve made is this blog.  I have had so many people connect with me who are experiencing some of what we go through and it’s very comforting to know that they are there.  Knowing how someone else has handled a situation or even just knowing that someone has the same struggle and is hanging in there and surviving each day helps us to push on. 
When Lynn became unable to move around on his own, we stopped going many places.  Mainly now we go to medical appointments or occasionally to the store for something only he needs (he is the only one who can determine what he needs in that department since I am totally incompetent when it comes to figuring out what is needed to fix something).  But even though we are now pretty isolated, reaching out through the internet to find out information or to connect to other caregivers or people with MS keeps us from feeling as if we are isolated.  True, it’s a virtual visit when we talk on-line, but it’s no different from a telephone call and when it’s on-line, it’s on my time which gives me more freedom and more options.
So even though it’s difficult to stay connected if you have MS, it’s possible and it’s necessary.  I cannot get away to go to support groups or conferences but I’ve found out SO much about treatments and options on MS  websites and by reading blogs or comments by people with MS or their caregivers.  We don’t have to be in this alone even if we live alone or in virtual isolation.  That’s why I started blogging.  I wanted to connect to others and hopefully share experiences or something that might make my experiences easier to accept or someone else’s easier to manage. 
I think the MS Connection site that is being set up by the National MS Society and which will go live March 12 (I believe) may help with that as well.  I’ve had the opportunity to see a preliminary version of it and it basically seems like a combination of an MS social network and educational resource. I hope lots of people will share on it because it will certainly provide a way for us to connect the dots from one to another even easier.

Connect the Dots Read More »

The Day It all Changed

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In 2010, I was going into work every day and Lynn stayed home alone. At that time he was still walking though he would lose his balance frequently and fall. However, being the stubborn man he was, he chose not to use his rollator unless absolutely necessary (i.e. he was too tired or had too far to walk) and would instead hold on to furniture to get around.  On this day in March, I left early to head to Williamsburg to attend a conference for the day.  It was approximately an hour drive to where I needed to go.  I got everything set up for Lynn for the day and off I went.  I had made it to the conference center and was checking in as my pager went off.  I dropped by things on a chair and went out to find out who needed me.  When I saw my home number, I got nervous but figured he was just checking to make sure I had arrived safely.  (He gets very concerned whenever I have travel.) 
I called and said, “I’m here safe and sound…no worries.”  Then I heard his voice and realized that maybe I had a worry after all.  He started out with something like, “I need you.”  One second, I’m annoyed thinking, “what can I do from here?” and the next I’m scared and I’m thinking again, “what can I do from here?”  He explained that he had fallen when he tried to get out of bed and had been trying for an hour to get up.  He was exhausted and panicked and obviously scared.   I did my usual nursing telephone assessment (are you bleeding, can you breath okay, anything hurting, did you hit anything on the way down…) I asked him about calling an ambulance but we didn’t have a key hidden outside and there would be no way for them to get in and no one else was at home for me to call to run over there.  So I told him to hold on and I’d be there as soon as I could.  I grabbed my things and took off.
By the time I arrived home, Lynn had been lying on the floor near a heating vent for about three hours.  He was exhausted from struggling to get away from the vent;  dehydrated from the heat; emotionally distraught from fear and frustration.  He was overheated and started vomiting shortly after I got him off the floor (which was very difficult by this point).  He was in bed for the next two days and was never the same after that.  To this day, he’s now afraid for me to leave him alone for any significant period of time and panics at the though of me being far away.
That day marked the day our lives truly changed due to MS–more so than being diagnosed; more than his losing his job; more than anything that has happened since.  That was the day he became DISABLED.  That’s when he faced his mortality and he realized that life as he knew it had changed and he was no longer in control.
That’s also the day we became “disconnected” from others  After that I started staying home full-time to work and only went into the office for meetings and then only if I had someone to stay with him.  We became more isolated.  Afraid to be around anyone who might make him sick, we stopped going to church.  Limited to a wheelchair (because now he was afraid to walk on his own) we could not visit friends because there was no wheelchair access.  I could not go visit my parents who live five hours away because their home is not wheelchair accessible.  I could not leave him along to go shopping so I shopped via the internet.  I couldn’t visit anyone so they had to come to us (and since we live in a rural area, that was not very convenient.)  I realized that if we kept going that way, depression would set in for both of us and his condition would deteriorate even more.
So we had to find ways to get connected!  I started asking for help from church. We have a wonderful church member who has created a ministry of sending email messages to members to keep anyone who wants to know up to date on prayer requests and praises or requests for assistance.   I sent email requests for help and before long I had the help I needed and the process of connecting again began.  Our families and friends now come to us more often because we have reached out and asked for help…and they give it abundantly.  Even our stent(s) in the hospital last year served to connect us to others.  Through that visit I came up with the idea of this blog by talking to the wife of another MS patient. 
And through this blog, I have connected even more. I connect to people who have MS, people who know people who have MS, people who care for people with MS.  Some live close by and some live very far away.  Some know very little about MS and others have lived with it for 20-30 years.  We are all different but we all have a common connection–MS or caregiving.  That bond makes us family and friends instantly–a connection that brings us together even though I would not know most of these people if I was sitting across from them.  But through this bond of our desire to care for each other and relate to each other,we are connected on an intimate basis.
The National MS Society is starting a similar connection on March 12.  It’s called MS Connection and will be located at  http://ntl.ms/MSconnection.   It looks interesting and looks like a way to help us all make more connections so none of us have to deal with this condition alone.  Check it out when you get a chance.  I think you’ll find it has lots of potential.

The Day It all Changed Read More »

How Many Specialist does it take to Treat One MS patient?

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As I have been reading blogs written by other caregivers or MS patients, that joke that goes around “How many xxx does it take to….” comes to mind.  When Lynn was first diagnosed, I had a basic knowledge of MS and figured that he would have a neurologist to manage all his care but what we have discovered is that specialists only manage their speciality.  If there is a hint of another problem, then Specialist 1 refers to Specialist 2. Often time Specialist 1 doesn’t talk to Specialist 2 and therefore, each Specialist does his/her own thing. 
Now, I’m all for having specialists because medicine is very complicated and I whole-heartedly believe that one individual cannot know everything about everything or maybe about anything.  In fact, the more I learn about anatomy and physiology (i.e. body parts and how they work), the more I know that I don’t know nearly enough. What I don’t understand, however, is why the specialists don’t all talk to one another.  
In theory, that’s what a general practitioner (i.e., Family Medicine or primary care physician) is supposed to do but they can’t do it unless the others all provide a summary of what they are doing as well and keep them in the loop.
When you have MS you will probably need most, if not all, of the following at some point:

  • A GP or HCP – (General Practitioner or primary care doctor) to handle colds, flu, new symptoms, oversee your general well-being, etc.
  • A neurologist – The one who will handle your medications for MS and in general treat your exacerbations and keep you informed about your condition.
  • A urologist – Often the water works don’t work so at some point you might develop bladder or kidney infections or have a need to self catheterize because it’s hard to keep your bladder empty or there are embarrassing leaks.  If bladder pressure increases and causes damage to the kidneys, then a nephrologist (kidney specialist) might also be needed.
  • A psychiatrist – People with MS often have depression or difficulty adjusting to the changes in their bodies and lifestyles.  It’s good to have someone to talk to and someone to manage medications so you might also have a counselor
  • An ophthalmologist – visual changes often occur and may be one of the first symptoms experienced that lead to the diagnosis of MS.
  • A physical medicine or rehabilitation specialist – to direct your need for physical therapy, occupational therapy, control of spasticity, ordering assistive devices, etc.
  • Pulmonologist – sometimes the muscles that control the diaphragm become affected and breathing difficulties occur.
  • Hematologist- many of the MS drugs cause decreases in the production of blood cells.  A hematologist can help determine how best to assist the body in reproducing the necessary cells or providing support in other ways.
  • Speech pathologist-often needed if swallowing or speech becomes affected.

Of course, once you get an autoimmune condition; other medical conditions often develop as well leading to more specialists….

  • hypothyroidism, which is the low production of thyroid stimulating hormone leading to the need for an endocrinologist
  • bowel or other GI concerns which may require the assistance of a gastroenterologist.
  • Heart arrhythmias or high blood pressure due to medications or anemia, etc. requiring a cardiologist
  • Surgeons to implant pumps to deliver anti-spasticity medications or maybe a feeding tube or nerve block.
  • Skin irritations, abnormal growths, wounds, dry skin…all of which might be addressed by a dermatologist.

Are you getting the picture?  MS can affect any “system” in the body.  Whenever the myelin degenerates due to a lesion eroding the nerve covering…whatever that nerve supplies will cause impaired functioning in that area this is no longer getting the necessary stimulation.  So essentially though there are often well-known symptoms of MS, any organ or body part could be affected.  Any new condition could be MS related or it could be a new condition separate from MS all together. 
So the thing to keep in mind here is that the only one who really knows the entire story is the patient and the caregiver.  As Lynn’s caregiver, I keep a book of when he saw which doctors, what he was seeing them for, what they did, etc.  I keep track of all his medications and take a revised list to every appointment with every doctor.  When a new therapy is needed or a new symptom comes up, I try to remind the “specialist” about all the other issues that might be influencing the situation. 
 Therefore, you (and the patient) are the experts.  You know more about your “patient’s” body and what works and what doesn’t work than anyone else.  As Lynn started telling his doctors when he was in the hospital, “you know your specialty but I know my body so whatever you want to do, we need to decide together.”  You have a right as the patient or as the “medical decision maker” to say “no” or to suggest a different course of action.  However, it’s also important to realize that they actually do know more than you do about the speciality so don’t totally dismiss what they suggest.  Just know that you know how you react and feel and that you are an essential component to the success of any treatment plan.
 So, how many specialist does it take to treat one MS patient?  The numbers may vary but the most important specialist is you (the big YOU meaning both you and the person with MS).  If you feel you need something…ask.  If you don’t understand what they are talking about, ask them to put it in simple terms so you can understand.  Each medical profession has its own language so don’t feel dumb if you don’t know what they’re saying, chances are they can’t talk whatever your language of expertise is either.  So ask!  Get what you need, check behind them, and if you’re not satisfied, find someone else.  It’s your life and the life of the one you’re caring for… so do what you need to do.

How Many Specialist does it take to Treat One MS patient? Read More »

Family of bloggers

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When I first started blogging I had no idea what I was doing. I had heard about blogging but since I don’t have a lot of free time, I had not read many blogs.  Then while Lynn was in the hospital, I was talking to a nurse whose husband also had MS and we talked about how difficult it was to go to support groups.  If you’re the primary caregiver, getting away from home for very long is a major effort so belonging to a support group, while it might be beneficial, was just one more thing I would have to do without.
I tried Facebook at first to see if I could connect to other caregivers but to be honest, I’m just not that sociable.  I’m not a “one liner” kind of person (obviously as my prior blogs demonstrate) and just giving a “shout out” to someone doesn’t feel like we’re really connected. Therefore, I rarely even go to my Facebook account.
I realized I wanted to “talk” to people who could relate to what I’m living. I thought there might be others out there who were going through the same thing and who might want to also connect by responding to what I had shared.  That’s where the idea of a blog grew….and it’s exactly what I needed.
When I write this blog I feel like I’m actually talking to someone.  I don’t know most of you but if you’re reading this, it may be because you know someone with MS or you have had to care for someone who could not care for themselves, or you otherwise related in some way with something I’ve said.  That gives us a connection…a sense of community.  When I get comments back on something I’ve written, I feel understood and that I’m not alone in what I’m doing.  Blogging truly has become a virtual support group for me.
What’s really cool is that sometimes someone will actually send me an email and they share their story with me as well.  I feel like I have friends that really get it because they are really living it, too.  We’ve become a family of caregivers–people who care enough to give of themselves.  So thank you for being there for me.  It’s really very healing for me to share my life with you. 
PS, guess who has also started blogging?  Lynn. He has just done two so far but he saw how much I enjoyed it and is trying it himself; only his is about writing.  You can check his out at http://authorrisingtide.wordpress.com/

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MS Diet

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One of the readers of my blog shared that she had heard of a diet to help people with MS.  She had a video of Terry Wahl talking about it. I was amazed as I watched the video that it was the exact diet that Lynn’s dietician has him on.  He started this diet the Monday after New Years and though there has not been dramatic improvement, he has actually been feeling better for the last couple of weeks so I’m very hopeful.
Here’s the diet for those of you who have not heard of it.
3 cups green leafy vegetables (kale, spinach, swiss chard, parsley, turnip greens, etc.)        
3 cups sulfur vegetables (brocoli, cauliflower, brussell sprouts, asparagus, leeks, mushrooms, garlic, onions, cabbage, etc.)
3 cups of bright vegetables or fruit
2 tsp of seaweed per week
grass-fed meats, wild caught fish, seafood, organ meats (grass-fed)
no diary (he uses coconut milk), no grains, no starches
The purpose of the diet is to support the growth of myelin and mitochondria both of which are necessary for nerve function.  Terry Wahl who was the speaker in the video says she went from a recliner and walking with two canes to riding horseback and bicycling in 1 year. 
Let’s keep our fingers crossed that this diet will make the difference.  It’s expensive but will certainly be worth it if it works!

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Too many changes in too short a time

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I’ve always disliked change.  I like things to be predictable and I like feeling in control.  I want to know what I’m responsible for, be able to plan my immediate future with some degree of probability, and I like to finish jobs and cross them off my list. Change doesn’t come easy for me but I eventually adapt.
This week has brought a lot of change. Ever since Lynn was originally diagnosed with MS, he has participated in a study whose purpose was to determine if taking Copaxone along with Avonex would reduce occurrences of exacerbations.  There were three groups; one got Copaxone and a placebo; one got Avonex and a placebo; and the other got both drugs.  We found out that Lynn was in the group that took only Copaxone.  Now that the study is over, he has to decide what he wants to take as a medication.  His doctor feels he did not do well on Copaxone because his condition declined rather quickly in those five years. Tough to say if it was the MS or the long hospitalizations but he certainly has a lot less function now than five years ago. 
Now he has three medication options to consider–Rebif, Betaseron  or Tysabri.  None are good choices for someone with probably progressive disease rather than relapsing/remitting so it’s a matter of which will do the least harm.  Betaseron can cause liver disease, thyroid disease, seizures, bleeding disorders, anemia and depression.  Rebif can cause liver disease, seizures, congestive heart failure, thyroid disease, and depression.  Pretty much the same as the other one but there is the risk of heart failure instead of anemia and you take it three times a week instead of every other day. Tysabri on the other hand can kill you.  It may cause a serious viral infection of the brain that leads to further disability and death. Supposedly there’s a test that will help determine who is susceptible to the viral condition but it’s no guarantee. Therefore, he’s not inclined to take that one.  Unfortunately, that’s the one I think his doctor wants him to try. I believe he thinks it might work better for him. It’s Lynn’s decision but as I write out the side effects, I’m not thrilled about any of them but I, too, lean more toward the Tysabri.  I am sure Lynn will not consider it at this time; however, so Rebif will probably be the one he chooses.
Rebif makes you feel like you have the flu for about 8 hours after you take it according to the literature.  So three days a week he’s going to feel lousy…oh, joy.  Not only that, I’m waiting to find out just how much the insurance will cover.  It costs around $30,000 per year I understand without insurance. Who has that kind of money?  I know the drug companies offer assistance but I’m expecting big dollar signs in our future.  I sure hope my insurance will cover the majority of it!
The other change I found out today was that we are no longer approved for home health visits.  We have 90 visits per year.  Lynn tried spreading them out so they would last till July when the number increases again.  Instead, because he was not using them as much, they got cut off completely.  Now I’ll have to call and try to persuade them to reinstate the number that was left.  Just one more challenge to face.  If they don’t allow us to get them back, then I guess we’ll see if he can do outpatient physical and occupational therapy.  That means three days a week driving an hour each way to therapy, paying $5 to park each day, and taking, at a minimum, three hours out of our day…actually more since there’s all the preparation time and then “re-settling” time afterwards.  I just don’t see how I’ll be able to keep up with work with all those trips. I’ll just have to find a way, I guess.
Speaking of work….I’m busier at work.  I go in only one day a week for about three hours but on that day, I get nothing done due to the travel and the fact that everyone wants to talk to me while I’m there so it takes me more hours to stay caught up.  I’m working seven days a week to keep up. If we have to start going in for therapy…well do the math.  On the other hand there is more therapy equipment there and maybe he’ll do better and get stronger faster.  We can always hope.
I admit I’m overwhelmed right now with all the change to be considered.  I know we’ll adapt and it will be become our new normal but it sure would be nice to just coast for a while.

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Happy Anniversary

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Today is my Mom and Dad’s 59th wedding anniversary.
When people comment about the sacrifice I’ve made to care for Lynn, I truly don’t understand why it seems so different.  I practice now what I saw my parents demonstrate for each other and for us, over and over again. Before I was born, my mom quit her job to take care of her family.  She has never gone back to work outside the home but her work inside the home keeps her busy more hours than most “day” jobs.  When we were in school, she was always active in the PTA; she and Dad often were the classroom parents who brought in cupcakes and other goodies.  They came to every play, every ball game, ever presentation that any of us had. They were always there for us.
When one of them is sick the other one is right by their side helping to make them comfortable. If one grieves, so does the other. If one is happy, so is the other.  They go everywhere together and not because they have to but because they want to.  They truly are the ultimate example of togetherness and oneness.  It was through their example that I learned commitment and self sacrifice. 
And it wasn’t just for us that they sacrificed their time.  They always pitched in to help our other family members with their projects and needs. My parents have always done what they can for others.  If someone in the neighborhood lost a family member, they always went to the wake and they always brought food to the house.  If there’s a celebration, they again bring food and enjoy the event with others.  My Mom records everything through pictures–then she creates these awesome photo albums that includes names, dates, locations and events –each picture has it’s own story.  She’s become the community historian.  She shares those memories with others at all types of community events and enjoys the pleasure her albums bring others.
My Dad can build and repair anything.  He spoiled me in my expectations for a husband.  If he sees something that needs doing, he does it then and there. Be it a car, a piece of equipment, an electrical appliance, plumbing, siding, brick laying, carpentry, whatever it is, my Dad can fix it like a pro.  He loves to read in his spare time and I’m sure that’s where I got my love of reading as well.  We often exchange books and talk about characters.  When we were young, he worked shift work.  He often took only a short nap before returning to work so he could stay up and be with the family, or watch a ball game, or help coach the team for one of his sons.  If there is a community event that needs a helping hand, he’s there. 
At the age of 79 my Dad and Mom are key partners in the community’s fire house and fund-raising.  They help clean up the parks in the area.  They cook for hundreds of people to raise money for the fire house.  They never stop.
When my Mom’s mom started having TIAs and strokes, she and her sisters took turns staying with her and caring for her.  During her last days, I think they  were there nearly full time.  When my Dad’s mom needed a place to live after my Dad’s brother died, they took her in and made her at home. 
My parents are caregivers at heart and they have passed that trait down to me.  They seek to make other’s lives better and there is nothing they would not do for me and my family.  I have been blessed to have them as my parents and to have their example as my guide.
Happy Anniversary, Mom and Dad.

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Privacy? You've got to be kidding…..

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I keep thinking about how this is a topic none of us talk about but everyone has to face at some point so I decided to write about it.  Warning, it may seem insensitive to some but in reality it’s one of the elephants in the room we don’t talk about.
If you are a caregiver (or the one receiving the care) you know that there is no such thing as privacy anymore.  I think that’s one of the most difficult things to get used to in the shift of our personal dynamic with each other.  It was one thing when I was a young Mom and my children followed me everywhere, but once they got to a certain age, that need to go with me everywhere stopped.  They became too embarrassed themselves to invade my privacy.
It’s different when you start losing your privacy when you’re an adult.  I’m 54.  I was raised to be very modest.  I have never liked going to the bathroom with anyone else around.  I never liked showering in gym class.  If I wanted to take care of personal hygiene, I wanted it done behind closed doors…alone.  Furthermore, I wanted those same lines of separation with my spouse to a large extent.  I was never one who felt comfortable with too much sharing of personal space or private moments.  There were just some areas of our relationship I preferred to keep separate.
Once Lynn became disabled, that of course, had to change.  He has NO privacy at all. He had to let go of his dignity completely as his ability to use his hands or balance himself were no longer in his control.  At first it was a little awkward but, like with most things, you both get used to it after a while…especially if you can laugh about it.  We have been in some very awkward situations that could have been humiliating and extremely embarrassing for both of us but instead, when I started feeling that uncomfortable tension mounting, I took a look at the situation we were in and I started to laugh.  Then he started to laugh and before long we were both nearly hysterical laughing. It has really gotten us through some difficult moments.  Thank goodness he has a good sense of humor or my laughing might not have gone over as well.
Another challenge we have had to over come is public restrooms.  I never realized before how difficult it is for the disabled in public areas.  Most places have a “his” or “hers” bathroom. Of course when we go out, that’s a problem for us because he can’t go into the “hers” and I don’t want to go into the “his.”  So what do we do?  We go to the van and take care of the catheterization using the tinted windows in the van to have privacy.  I admit though I see some strange looks at times when I catch sight of people looking in the window as they pass by!
Lynn’s really a good sport about those situations but I’ve found that I’m not there yet when I need a private moment.  You would think that as often as I have to take him to the bathroom or cath him or shower him that I would have no problem when I need to go myself when he’s around but honestly, I still want my privacy!  I resent not being able to go to the bathroom without hearing my name called for help or him waiting expectantly for me in the public restroom while I relieve myself.  That’s just a little too much closeness for me.
So I guess what I’m saying is I want a double-standard when it comes to privacy.  I want my space and I want my own time to have my space without being urged to hurry up.  I want to be able to lock my door, take as long as I want, and do what I want to do in private.  I admit I’m actually glad at times that he can’t follow me when he’s hooked up to his peddlar or in bed because I know that even if he’s calling for me, he will just have to wait. So the bathroom is still my one private domain (at least at our house). I might have to repeatedly say, “wait a minute,” but I can still have my privacy to some extent. 
I’m sorry that he can’t though.  It’s just one more loss that most people don’t even think about but for those of us of live with it everyday, it’s a reality that takes some getting used to.
Hope I haven’t offended anyone.

Privacy? You've got to be kidding….. Read More »

Not anemia? Guess it's MS…

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Lynn saw the hematologist this week to try to find out why his hemoglobin goes up and down.  When we got the lab work back, his hemoglobin had dropped one point which wasn’t that bad actually.  So then why does he get so cold so often? 
The good news is that the doctor ruled out anything like cancer or anemias that are related to serious long-term complicated conditions.  The bad news is that he’s not sure what may be causing it.  He believes that it’s either due to malabsorption (his dietician votes for this option) or it could be due to something interfering with production.  We found out that interferons can affect blood cell production.  Did you know that?  I didn’t. 
He’s been in a study for five years that has him taking two different medications. It’s a blind study so he doesn’t know for sure what he’s taking but the options are either avonex and a placebo, copaxone and a placebo, or both avonex and copaxone. Based on the side effects he experiences, we’re pretty sure he’s been on both avonex and copaxone. The doctor thinks that it’s possible since he’s been on the avonex for five years, that may be part of the issue.  However, he says that there is evidence to suggest that part of the issue is inflammation. 
inflammation? Well, we all know that MS has inflammation at its root.  After all what is an exacerbation but inflammation at a nerve site?  So maybe as his MS inflammation increases or decreases, his production may be affected.
The other thought is that he may have an MS lesion on his hypothalamus.  The hypothalamus regulates body temperature. If he has a lesion short-circuiting his body temperature control then this may be a long-term symptom he has to address.  Talk about being bummed out!  That was rather depressing news. We wanted something he could do something about; not something related to MS!  The hematologist said the coldness could not be related now to anemia because Lynn is no longer anemic…makes sense but then again, anemia, as least iron deficient anemia, has a treatment.  MS basically doesn’t when it gets to the secondary-progressive stage.
So now part of our “normal” life will be dealing with swings in body temperature.  He’s having a really difficult time maintaining a feeling of “normal.”   He either feels like he’s frozen to the bone…wrapped up in arm warmers, leg warmers, drinking hot tea and putting on a snuggie; or he suddenly gets over heated and is ripping off all those things looking for ice water.  The odd thing is too that if you take his temperature with a thermometer, that it doesn’t really change. His temp is almost always 97.5 or there about.
Very disappointing news. 
We did have some good news this week though—Eric, his son does NOT have MS!!  He had an MRI Jan. 24 and it was completely normal!.  We were all very relieved. Lynn has always been afraid that he might have passed the gene to Eric and that he would end up suffering because of him. It’s a relief that is not the case right now.  We know that just because he’s free of it right now doesn’t mean he will always be so but we’ll take it as good news for now. 
So all in all, last week was a typical week living with MS.  It had its good times and it’s not so good times; it brough new challenges and use of old coping tricks.  As with most of life, it’s best to take it one day at a time, keeping it flexible and adapting to the moment and most of all, finding what you can at laugh at each day.

Not anemia? Guess it's MS… Read More »

In sickness and in health…till death do us part

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Donna and Lynn October 11, 1997

Sometimes I catch people looking at me in sympathy and you can read in their eyes that the path I have chosen is too much of a sacrifice but what they don’t seem to understand is that I did in fact choose this life.  No, I did not go out and look for someone who I knew would someday become disabled.  In fact, I was very reluctant to marry anyone after my first marriage ended. 
When my first husband left, he explained he had never loved me but thought I would make a good mother for his children so he married me…then realized that wasn’t enough.  Therefore, after being burned in that fire, I wasn’t so sure marriage was for me. I wanted companionship and I wanted someone who was a man of faith and had strong family values.  I wanted mutual sharing and participation in our marriage. 
The way I met Lynn was through answering his personal ad in the paper.  I screened him as he screened me for two hours during that first phone call.  I prayed about continuing to see him and it seemed that I had the green light.  We dated for about four years before we got married.  Neither of us were in a hurry because both of us had bad experiences the first go round.  I in-fact prayed often to ask God, “are you sure he’s the one I should be with?”  We actually have very little in common except for our faith and family values.  Was that enough?  God seemed to be saying, “yes.”  Even on my wedding day, I kept wondering, “should I really do this?  We are SO very different, how will we ever make this work?” but I took a leap of faith and moved on.
The first few years were very hard as we tried to blend our families and life styles. Those differences I was afraid of were really hard to adapt to.  We really struggled and both of us wondered during that time if we had made a mistake.  We just could not intertwine our lives it seemed.  We each kept ourselves at a distance; I guess both being afraid it would not work.
My biggest issue with our marriage was that he did not need me.  By nature, I “care” for people.  I do things for them; that’s how I show my love.  I couldn’t really do anything for him.  He didn’t need me and I felt shut out.  Then he got MS and though he was still physically able, he needed me.  He needed my support; my reassurance and my understanding. 
I think he had a fear though, at least initially I think he did, that I would get frustrated and leave.  He often talked about how he didn’t want me to get too isolated or fed up with him because he didn’t want me to leave.  I think he finally understands now that I have no intention of leaving.  God gave me a caregivers’ heart.  I don’t mind being a caregiver.  I like being needed in fact.  I don’t mean that I don’t get frustrated and that I never want to escape; no, I feel like that nearly every day.  What I mean though is that we have a bond that we will not break now.
Lynn needs me.  He needs my companionship.  He needs my help.  He needs my participation in his life.  So now I have what I was looking for when I first got married.  I feel wanted and appreciated and needed.  His illness meets my needs in a way.  I guess that sounds sick to some but I don’t think so.  I think God is very wise.  He knew what I needed and he knew what Lynn was going to need, and he put us together.  He gave us both perseverance and commitment to make it through the tough years so that now we both have what he intended us to have.  We are truly one now.  We are each a part of the other. 
I know many marriages break up when one of the partners becomes disabled.  I can see how it could easily happen.  It’s really hard to be the strong one all the time and to dedicate your life to the comfort of someone else, but when I said, “in sickness and in health…till death we do part,”  I meant every word of it.  I’m in it for the long haul whether that’s this year or twenty years from now, he’s stuck with me because I’m not going anywhere.

In sickness and in health…till death do us part Read More »

What a roller coaster!

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Just when you think things are getting better, they start rolling down hill again…
Lynn’s dietician put him on a special MS diet with the purpose of improving absorption of nutrients and more importantly, iron, since he struggles with iron deficiency.  He has to eat three cups of green leafy vegetables per day, three cups of vegetables high in sulfur (broccoli, brussel sprouts, asparagus, etc), three cups of bright-colored vegetables or fruit and the meats each meal must be grass-fed meats or seafood.  Seems like I’m feeding him all the time!  And talk about hard to find…grass-fed meats are not at most grocery stores so the saint who makes Lynn’s meals for him had to really shop around to find them.
Anyway, it doesn’t seem to be working.  Instead of feeling better, he’s much worse over the past week.  I’m sure his hemoglobin, iron, and ferritin levels must be dropping.  He has absolutely no energy, he’s cold all the time again, and just miserable.  I look into his eyes and he just looks sick and weak.  So, I’ve put in a call to get an appointment with a hematologist to find out if something is wrong with his blood. Meanwhile the dietician is working on getting tests to see if the issue is the permeability of his intestines causing him not to absorb what iron he’s taking in.  Unfortunately most of those tests are not covered by insurance so we’re waiting to see how much that will be.  Of course, we will have to do the testing because we have to find out what’s wrong. He’s miserable and when he’s miserable, so am I….Not because I’m such a sympathetic person…no I’m no saint…I’m miserable because he needs constant attention and my patience over doing the same thing over and over is limited.   Like now.  I have to go cath him and I just did that less than an hour ago, and the hour before that…!  Ugh…
I was hoping now that I need to try to go into work one day a week that he would be well enough to make this process easy but when he feels bad and needs so much attention, it’s more difficult.  It went well this week but I was only gone from 7:30 until 11:30.  His mom stayed with him.  Next week my friend will stay with him and I’ll probably be gone a little longer.  He’s been a bit depressed about me going back.  He feels that I’ll be so glad to be away that I’ll want to go in more and more and to be honest, I expect he’s right.  It was actually very nice to be among the working again and to not constantly be interrupted to do something totally non-related to what I was trying to accomplish. 
As tired as I expect I’ll be on those days, I’m looking forward to it although I admit I feel guilty about that.  I know how much he wants me to be here and I know I can probably give him better care than anyone else but I really need a break and some time to myself.  He reminds me of my children and how they would cling when I left them at daycare when they were young. I always felt guilty to walk away when they were clinging or crying–that is until I got to my car.  When I drove away, it was a relief not to have the pressure of the crying and clinging and I admit, that’s how I feel now–relieved to be away.
I hope this works out–my going back to work–but I see trouble on the horizon.  If he’s got a blood disorder then it may be a long-term problem that makes him more difficult to leave.  If it’s malabsorption; hopefully medication will fix that.  I don’t know what it is but it’s something and I sure hope they figure it out soon.  It’s time to move on to some healthy days….
 

What a roller coaster! Read More »

Back to work

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I have so much going through my mind today that I find my emotions on the surface for no real reason other than overload.
We’re having friends over for dinner tonight.  They are bringing the meat and I’m doing the vegetables. This is a couple we really enjoy being with and can be ourselves with so why am I feeling overwhelmed?  Maybe because it’s 1:30 p.m. and I haven’t been able to go to the grocery store yet to pick up the vegetables. Maybe because in the course of writing this paragraph, I’ve had to go back to the bedroom twice where Lynn is supposed to be resting.  Once because “I’m ready to get up,” but he changed his mind.  Once because “I need you to push my toes”  (releaves muscle tension) and again now because, “I’m ready to get up now to peddle” and each time he calls me I go back there and he is snoring….but insists the minute he opens his eyes that he has not been sleeping and must get up because his legs are aching so much. I’ll be right back…
It’s now 3:41.  Yes, I have been helping Lynn with one thing or another since I wrote the last paragraph and can now resume where I left off. I’ve cathed him, given him his two MS shots, gotten him dressed and into his wheelchair, connected him to his peddler, given him his nose spray twice, adjusted his clothing for comfort five times, heated up his lunch (eatten mine as his cooked), fed him, cleaned up afterwards, cathed him again, answered some of his emails for him, put the dishes away and sat back down to write this again.  Oh yea, and canceled our dinner plans.  He’s achy and can’t get comfortable; he’s sleepy and irritable; just not a good day for company.  What’s wrong? Probably the change in atmospheric pressure.  We have been having the weather go from hot to cold to hot and now back to cold and when that happens, it wrecks havoc with his system so it’s not a good time for company. 
Though disappointing, not having to worry about getting ready for company is actually a relief today.  It’s fun when things are going well but not when they aren’t.  We had plans today to have the dinner tonight and to go to the fabric store and Lowes this morning to get things for the device he’s building for his legs to move in bed.  We didn’t do that either. His stomach was grumbling and questionable.  He was very tired and I was on the edge of tears most of the morning  just trying to get chores done so we could go.  When life gets like that, it’s just better to stop and let it go.  Maybe tomorrow we can go those places; or maybe not.  He had his Avonex (IM MS drug)  today so tomorrow he will feel achy like he has the flu so it might not be a good time to try a trip then either.  We’ll see.
The other stressor I’m feeling is that next week I have to start finding a way to go into work some.  Yep, the full-time working from home has come to an end.  I’ve been blessed to have it for a full year after his initial hospitalization but my supervisor asked me, very gently and kindly, if I could find a way to start coming in more often.  She was very nice about it and certainly didn’t have to be; after all I have an important job there and I’m needed so they have been more than accommodating.  In fact, she still is.  She isn’t making me come back there full-time and suggested trying once or twice a week for a few hours to see how it worked.
I have to admit, I have very mixed emotions about going back. 
Worries:  Who will stay with Lynn?  He wants me to go in on either Mondays when his son, mother, and sister come to visit or Thursdays when our friend comes to help him with his writing and book marketing.  That makes sense…he’s comfortable with all of them and they all have an idea of what to do for him but now it will go from them “wanting to come” to my “needing them” to come.  I’ll need back up plans for if they are sick or have something else to do so that will add pressure every time I plan to go in…will they come?  Plus none of them can cath him so I’ll have to put in a foley.  Foley’s are more irritating and cause urinary track infections easier due to the irritation and direct access of the catheter from the outside of the body to the inside.  We’ve had one really bad experience with a UTI which landed him in ICU. I learned from that but it has left its scar. 
Plus getting ready to leave him is always a lot of work; getting meals ready, comfort items set up, and providing him with emotional comfort. He has a lot of separation anxiety when I leave him and he can’t help but to show it which makes me feel guilty of course.  If I decide not to use family, I’ll need to find someone to come in that he likes and we can afford.  That means researching what our insurance will pay and the different care options.  Ugh, just one more task.
Pluses:  On the other hand, I’ll be able to get away.  I REALLY need to get away.  I can feel the stress build up of constantly having to stop what I’m doing to scratch, adjust, fetch, move, etc.  I miss the people I work with.  I miss doing something that is productive and is an accomplishment.  I miss interacting with others and I need to be able to get away from “Hey Sweetie!” 
I think going back to work will be a good thing.  He needs to learn to let me go and I need the break.  I hope I can handle the extra work though.  To go into work means I’ll actually have to work more hours.  Currently, I can just go to my desk in my living room and begin work.  Now, I’ll have to get myself ready and get him ready and drive the 45 minutes – an hour (depending on traffic) to my job and back so all that will be lost time I’ll have to make up.  So in order to work two hours there, I’ll have to make up four hours when I get back home or on the weekend.  If I go in twice, then it doubles.  It will certainly be a challenge but somehow I’ll make it work.  I have to…so I will.

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