Emotional Effects

The emotional toll being a caregiver has on the individual

Wanted: Caregiver Ten Hours a Day

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I needed to go into work on Monday.  I was supposed to be meeting someone at 12:30 so I had to leave by 11 (an hour to get to work, 30 minutes to walk to the  location of the meeting and time to prepare for the meeting).  To leave by 11, I have to allow three hours preparation time at least.  To leave, I don’t necessarily have to have someone here but Lynn has to be out of the bed and “set up” for both comfort and safety.  Therefore, to get to work to attend a meeting at 12:30, I need to be out of bed to start by day 4 1/2 hours before the time I need to be there.
Because I come on site only one day a week, I usually set up back to back meetings for while I’m there.  It also never fails that when people see me in the halls, they stop and ask my advice on whatever is happening in their area at that time (that’s my job essentially; I give advice).  I usually take some type of ready-made lunch bar as my lunch to chow down as I walk between meetings.  The entire time I’m on site, I’m watching my time knowing that on my way home, I have to stop and get groceries while I’m “in town” and whomever I’ve asked to stay with Lynn is usually anxious to get back to their lives.
It’s almost always the case that I’m running late.  Lynn always needs several “just one things.”  My relief usually walks in the door as I’m trying to walk out so I get no help getting out the door.  Once I’m at work, I always have at least one or two, “have you got a minute?” requests.  Then grocery shopping always takes longer than I think and I almost always need to add a stop of two (library, post office, another store).  Therefore, I’m always late and always feeling guilty for being late.
Monday it really got to me.  I ticked someone off at work before I ever got there about a class I was supposed to teach and didn’t want to because the registration was only for one person.  I finally said I would teach it but they had arranged for someone else to cover for me and that someone was annoyed when I said I would take the class over after all since she had spent her weekend re-doing my slides.  I felt so guilty for having her cover for me that I cried all the way into work.  Then I went to her office to apologize for her being asked to do my class and I cried again. I hate for anyone to do my work for me! I don’t want people to think I’m slacking off and I know that because I work from home, people think that I’m not doing my job as well.They don’t say that to my face; on the contrary they tell me how amazed they are at what I get done; but I see  the looks.  I know the tone of voice.  I know when I’m not told about things that I SHOULD be told about and when I’m not included in things that I should be included in deciding.  I also know what is usually said about people who work from home–Are they really working all the hours required?  Can they be counted on?  Are they really meeting the expectations of the job? Should they be required to come back into the office?
That last question is the big one for me.  I would love to be able to work from the office and escape from being a caregiver/full-time worker every day.  However, I know that if I was required to come into the office, I would probably have to find a way to quit.  On my salary alone, we could not afford a 24-7 caregiver for him.  I also know that if I took over his care when I got home that with all I would have to do between arrival and departure the next morning, I would get even less sleep than I do now which is on average only six hours a night.  Driving would not be safe; physically I could not keep up.  Plus if Lynn had to use a foley every day and still used the peddler as much as he does now, he would get a urinary track infection from the trauma of the constant movement.  His last UTI landed him in the hospital for three months due to various complications.  I don’t want to go there.
So I decided to hire a care giver one day a week for 8-10 hours a day to arrive an hour before I had to leave and to stay long enough for me to do all I needed to do.  I wanted an employee.  Someone I could give instructions to and who would do all I asked because he/she was being paid to do so.  Someone that was a stranger so he/she could help Lynn with hygiene and tolieting issues without embarrassment to either.  I told Lynn what all I wanted this person to do … and he asked his son to do it.
Don’t get me wrong.  His son is awesome about helping me out but he has a new job that is already making it difficult for him to be here as often as I need him.  Plus Lynn doesn’t want him doing as many personal things for him because he doesn’t want to embarrass him or make him feel overly burdened.  I know Lynn was trying to help out and I know he would feel more comfortable with his son than anyone else but now I don’t think my goals for what I need will be met. I’m going to see how it works and plan to request of him all that I would have requested from a paid caregiver just to see, but I’m not confident.
Keep your fingers crossed for us!

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Trying to be All Things at All Times

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I’m having one of those “half-empty” days.  Didn’t start out that way.  I was excited because Lynn was having his Tram delivered today and I knew he would be happy to have that.  The Tram is a device we bought to help him stand and perhaps even walk one day so it’s a “hopeful” device based on our faith that he will be able to do more in line with walking, in time.
However, he woke up not feeling well from his Rebif shot last night.  When he doesn’t feel well, my day becomes devoted to his constant need for attention.  I needed today to catch up on work I was behind in from my job.  I count of having some dedicated time on Saturday and Sunday to make up for the time I have to spend caring for him during the week. Well, it’s now 7:30 p.m. and I’ve given up the hope that I’ll get to do any work.  I realized I was depressed and feeling overwhelmed so I decided to talk to you all because I know you understand.  In other words, you’ve “been there, done that.”
I get so discouraged sometimes.  Lynn wants me to be all things at all times and I get so tired of trying to keep up with it all.  For example, he has an itch that needs to be scratched so he calls me to come scratch his leg.  I get there and he looks at me expectedly as if I should know what itches so I go through the twenty-questions routine to narrow it down.  “Which leg, top or bottom, nearer the foot or thigh, inner or outer side,” until finally I get an idea of where the itch is.  Then I scratch wondering if I’m coming close and when I can stop.  He expects me to instinctually just know what he needs.
A few minutes later, “Donna, come fix my patch.”  Lynn has a pressure ulcer on his buttock I’ve been treating and covering with a foam-type patch.  It’s large enough that it pulls on his skin hair at times or sometimes the problem is the air-bladders in his seat cushion that press against it and make it hurts.  Whatever the problem, he expects me to make it better. He looks at me imploringly to say, “make it stop hurting” and I fiddle around under his leg, lifting it up, smoothing out the wrinkles, padding down the sharp points that come from under-inflated air bladders to see if “it makes it all better.” Sometimes it works right away; other times I work and work to make it all better. When it’s the last scenario, I feel like crying in frustration before I’m released by him to go back to whatever job I was trying to do before he called me for help.
When I’m not magically trying to fix pain and discomfort, then I’m acting as psychologist.  This week he got depressed because he had a visitor who choose to tell him about two people she knew with MS who had serious complications or whom the disease had devastated.  One of them died and the other is bed-ridden and in a lot of pain all the time. After she left, Lynn, in exasperation asked, “why do people do that? Why would anyone tell someone with a chronic health condition about someone with the same condition that was doing much worse than they are?  Can’t they understand that I don’t want to hear about how “bad” I could get? It’s hard enough to keep a positive attitude and keep fighting this thing without someone trying to bring me down with stories of how others lost their battle.” After that visit he was irritable and easily annoyed for a while so he needed a lot of attention.
A new challenge lies ahead for me. Lynn now has his Tram which could lead the way to a lot of progress OR it could result in a lot of disappointment and frustration if his condition won’t allow him to stand with support.  However, who is going to be the one to help him with his goal of walking?  I am of course.  Insurance cut out his home visits for Physical Therapy.  They might approve outpatient visits but honestly, if I had to take him in for PT every day, I might as well give up my job now.  It takes a minimum of three hours to get him and I ready if we are going somewhere or having someone come to us; then there’s thirty minutes or up to an hour to drive to wherever we’re going.  Therefore, to save time, I’ll have to become his PT.  I already help him every morning to change weights, apply straps, adjust positioning, hold equipment, etc. while he works out. I’ll be adding to that assistance with standing. He will need to increase his endurance by standing longer at a time so I’ll have to be close by meaning–more time away from my paying job.
Everything he asks me to do he needs to have done for optimum health. Everything he asks me to do though takes time from all the house maintenance, car maintenance, shopping, cleaning, food preparation, personal hygiene, job duties, making appointments, etc.  He REALLY needs a full-time assistant but our bills are significant enough that I couldn’t carve out that much money to have someone full-time–and in-home care is not covered by insurance. I feel like I’m working twenty-four hours a day; seven days a week.  I haven’t had a day away from him that wasn’t related to my going into work since Eli was born and I stayed at the hospital all day/night with Sarah and Greg waiting for his arrival.  That was May 27.  Before that I had a shopping day in October looking for a dress to wear to my nephew’s wedding.  That’s the only time I have been away for several hours unrelated to work in a year.
I’m tired.  I’m discouraged.  I need sleep.  I need to get away…..but I need to go give him his shower, fix dinner, get things ready for his family who are coming to our house for an after-Christmas gathering tomorrow, and meet him many requests for assistance till I fall into bed around 2:00 a.m. tonight. Oh well, life goes on…
PS:  Don’t worry about me. I’m just using you to regenerate myself. Thanks for allowing me to share my feelings with you.  I can’t do that with Lynn; it would hurt him too much.  I’ll be fine.  I’ll see my grandson tomorrow for a few minutes and the world will be smiles and coos again.
Thanks for listening.

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Which Half of the Glass Am I Today?

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I have become a “glass half empty” type of person.  I’m not sure exactly when that occurred but it’s definitely true.  Whenever something comes up as a possibility, I think about the risks associated with it and start preparing myself to deal with those possible traumas and disappointments. 
It drives Lynn crazy. 
Lynn is very optimistic.  He looks at the possibilities and he believes in potentials.  He talks about walking again and building the house we started years ago.  I respond with, “you have a lot of muscle groups to retrain. Don’t get disappointed if you are not able to walk by the time you want to be able to do so.”  In my mind, I don’t see walking even as a possibility.  In his mind, he feels that as long as he keeps a positive attitude and keeps trying, anything could happen.   I want to be more like Lynn.
So with that in mind, I’ve decided to turn over my glass and let it be half full today.

  • Instead of dirty carpets that are covered with stains that can never be removed, I see the blessing of dirty carpets that can have anything spilled on them and it not matter at all.  What’s one more stain?
  • Instead of worrying about cleaning up the clutter that has accumulated around the house, I see that I have immediate access to the things I need without having to climb step-ladders or go to the attic.
  • Instead of being sad that I never get to go shopping to pick out new clothes or browse whatever might be there, I realize that I’m not being exposed to the flu and other ailments so many others are getting from being in crowds and sharing door handles.
  • Instead of feeling sorry for myself because I can’t go into work and see people face-to-face so that I get a chance to get away, I’m thankful that I don’t have to put on make-up and do my hair and I can work at my desk in my scrubs and slippers while participating in conference calls with directors and VPs.
  • Instead of complaining about all the medical equipment we have stored in all our spare rooms, I’m thankful that he has access to so many things and is making progress toward moving back to the less dependent modes of movement.
  • Instead of complaining that he’s playing his music so loud I can’t hear myself speak when I’m at the other side of the house, I am thankful that with the music I can hear him sing when for so long he didn’t have the breath to say a full sentence.

I know that as a caregiver, I have to think about the “what ifs” and have contingency plans. I know I am responsible for his safety and for realistically planning for what lies ahead.  But I’m thankful that Lynn isn’t like me.  I’m thankful he doesn’t give up and he keeps hope alive.
I’m thankful that we are different; that he’s “half full” to my “half empty” and that when we blend together we are both “full.”

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Quiet Time

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One of the rarest privileges I have as a caregiver is quiet time.  When I’m awake, I am always listening for his,”Hey, Sweetie,” call that says I’m needed.  During my work day if I’m not taking care of his needs in some way, I’m working.  From the moment I get up…no actually, twenty-four hours a day, I am being called on to either meet his needs, work, or care for our home and personal needs.  Twenty-four hours a day EXCEPT for the time between 10:00 p.m. and when I wake him for dinner around 1:00 a.m. (though tonight I’m letting him sleep longer so I can write this.)
Those three hours are my escape time.  For those three hours, I know (most likely) I can do whatever I want without being interrupted.  During that time I usually finish whatever work is still waiting for my attention, I cook dinner, prepare his meal for the next day, make smoothies for the next day, clean the kitchen, take a shower, eat my own dinner while I listen to a book (my primary form of entertainment) and occasionally throw in a few other chores.  He used to get annoyed at me for letting him sleep so long but he’s finally realized this is MY TIME.  I don’t otherwise have any period of the day where the time is my time and mine alone. 
My time alone is very precious to me.  I don’t want to share it by making phone calls (not that too many people are up socializing that time of night anyway).  I like the opportunity to finish what I’m working on.  I like being able to finish a complete thought without being interrupted.  It’s time I have control of and I can use as I see fit.  Granted I am usually working, not relaxing, but just having control of the time is so much better than the frustration of constant interruption. 
I realize parents maybe thinking that it’s the same for them but it’s not.  With a child, they sleep better and longer hours (I’m up every two – three hours all night every night) and children often go to a friend’s house to play or be handed off to the other parent (if one is in the house).  Not so for me.  Even when others are here, I’m still the primary caregiver and still working around his schedule and needs so it’s not my time.  Therefore, when he talks about making me promise to get him up after two hours, I just can’t bring myself to do it.  I think he’s finally gotten the message that these three hours are my sanity time.  If I didn’t have them, I might actually be bald from pulling my hair out or have had a break with reality.
He’s been asleep now since 10 p.m. so I really do need to go get him up for dinner plus I will get up too late in the morning to have a full day if I don’t get this last job of the day done… so I have to bring this to a close…but I love this time so much that it’s really difficult to bring it to a close.
Oh, well,….

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There are Worse Things Than MS

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I got a text message from my son this week asking us to pray for him, his fiance, and her family.  His fiance’s mother was recently diagnosed with stage IV lung cancer that had spread to her bones. She has had a month of radiation and a couple of weeks of chemotherapy but she is not tolerating the treatment well (she has lost 28 pounds in a month and was already very small).  The doctors are recommending that they stop treatment and consider hospice.  Her only child, my son’s fiance, has been holding up extremely well during all this taking on the burden of support and caregiver for her mother; but it finally got to her when she was asked about a “do not resuscitate” order. 
My son and this young woman have been dating for about six years so I’ve grown very fond of her and when he shared this information, it really hurt my heart to think of her upcoming loss and what her mother must also be considering.   Next weekend my step-son (Lynn’s biological son) is getting married.  I have to wonder whether my son and his fiance will now rush to get married while her mother can still participate in the wedding.  It would be a very simple affair I’m sure since time will not allow for planning but I can imagine the desire of the daughter to have her mother there and the desire of the mother to see her daughter married.  Suddenly plans change when your focus is narrowed in on time and what’s of utmost importance.
I’m fortunate that Lynn is currently doing well.  He’s stronger and better able to move than he was at this time last year which is a blessing; however, his ability to do things for himself is no better and may actually be a little more limited.  But still, he is doing better so I’m not focusing on avoiding readmission to the hospital or making plans for greater support.  However, I know that one day, that will occur…just not now.
Sometimes looking at the long road ahead and the expectation that as he needs more support, I’ll be getting older and less able physically to provide the care he needs it becomes overwhelming.  On the one hand I hope that he won’t linger in a state of total dependence on anyone while he lies in bed unable to move or do anything on his own.  I know he had rather die than end up like that so if that point occurs, I hope he dies quickly.  But I hope that is a very long way off because even though it takes so much out of me to care for him as I do, I had rather have him as he is now than not at all.  We still share so much and still find joy in our lives and I hope that the blessing of being together continues for a long time to come.
So when faced with the awareness of how fleeting life can be, I realize once again that there are much worse things than having MS.  What he has is a nuisance but he still has life and joy and hope and that makes MS just A thing not THE thing.

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Hygiene and Grooming – Sweating the Small Stuff

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Today was Lynn’s six-month visit with his dentist.  Tonight, after his shower, was time to cut his fingernails and file them.  Between the two activities I began to think about all the small things a caregiver takes over for their charge that are so important to that person’s self-image and feeling of being clean and neat.  Most of these things are those intimate tasks that you shut the door to the bathroom to perform as you scrunch up your face and look in the mirror or drool as the toothpaste runs down your chin.  They are also those tasks that on TV comedy skits get a “yuk” when it’s mentioned doing them for someone else but which if you can’t do them for yourself, are demoralizing if they do not get done.
Mouthcare
No one wants bad breath or to be speaking to someone with a big chunk of spinach stuck between their teeth.  Nor is their anything more annoying that a piece of meat stuck between your back molars and your tongue can’t work it loose.  Right?  Absolutely!  So dental hygiene is really important for everyone; not just to keep your teeth so you can chew food but also because you want to look attractive and not disgusting when someone speaks to you.   It’s one thing to floss and brush your own teeth but it’s quite another to do someone else’s.  Sticking our big fingers into someone else’s mouth to floss is pretty difficult–there’s just not much room in a mouth. Knowing when you’ve gotten all the chunks out is another–you can’t always see that stuff; sometimes you have to just floss, rinse, repeat till it doesn’t feel weird anymore. 
Dental care is very important for maintaining teeth and gums but also, as I mentioned before, for the person’s self-esteem and comfort.  When your teeth are dirty, you feel dirty all over.  You don’t want to talk up close to anyone for fear your breath stinks.  It can really make a person self-conscious and more isolated.  Something seemingly so small can be very significant to overall mental health and a positive attitude.  So as much as I don’t enjoy leaning into Lynn’s mouth to pick his teeth, brush and rinse, I try to do a good job and not complain, too, much when I have to repeat, and repeat, a process.  I must be doing okay because he got a good report today — “look, Mom, no cavities!”
Manicures
When I hear manicures I envision beauty salons with a manicurist filing fingernails and applying the perfect shade of polish.  I’ve never actually had a manicure but that’s what I think it would be like.  But for caregivers, giving a manicure to someone can be a scary experience.  When you clip your own nails, you know how deep you’re going to avoid pain.  Lynn likes his nails short so I admit, I’ve drawn blood a few times and it’s a really bad feeling to see that red spot ooze up.  He also has a little anemia at times causing his nails and his skin to be similar in color so it’s not always easy to tell when I’m going, too, deep. 
Fingernails though are at least easy to file and cut but for some (and Lynn is one) toenail clipping can be very difficult.  Sometimes I think I need the strength of the muscle man at the circus to cut the nail on his big toe!  But just like cutting fingernails is important to keep his nails from hanging on clothes or tearing or to keep him from scratching himself (or me) accidentally, foot manicures are also important to keep socks (particularly toe socks like Lynn wears) and shoes from causing cuts to the skin from sharp nails.  Foot hygiene is also important because circulation to the foot is often impaired for someone who is immobile so you need to keep a close watch on skin tears, blisters, or wounds so terrible things like gangrene do not set in.  That’s an extreme but if you’ve ever seen a poor diabetic’s foot after a foot ulcer goes deep, you’ll never ignore foot care again.
Hair
Doing hair care, at least for us, is easy.  Lynn has very curly hair and all I have to do is shampoo, rinse and towel dry and he’s good to go.  I think about men who are caregivers for their wives or other female family members.  Learning to curl and style hair must be tough and probably must give way to simple styles for most.  I’m fortunate that Lynn’s sister who cuts hair for a living, cuts and styles his hair when she visits so we don’t have to go anywhere to get it done.  Just another reason I’m glad I’m caring for a guy because you can bet that if I had to care for a woman’s hair, I would have a standing appointment at a beauty salon for her for sure.
For me, learning to shave his beard was interesting.  Learning to shave so that all the hair was removed by cutting against the way it grows was not instinctual.  Also, learning to shave loose skin around the neck or tight places around the mouth or nose was challenging.  He’s growing a beard and side-burns for his son’s wedding and I have been a slow learner on how to shape his mustache and side-burns so that they turn out like he wants. Lucky for me again though that he’s not a girl and wants his legs shaved or his underarms.  To my male counter-parts:  I salute you if you shave legs, underarms, and pluck stray facial hairs.  Those things are important to a woman’s image but must be a pain for you to do.  Furthermore, if you apply make-up, there’s an angel in heaven smiling at you for your gift to your lady friend. Thank you for those efforts on her behalf.
Sweating the Small Stuff
Those are just a few of the little things in life a caregiver takes on that most people do automatically but which become a challenge when you’re doing them for someone else. They’re very important though and therefore, well worth learning to do.  I certainly hope when my day comes and someone needs to care for me, they will do the small stuff, too.

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Just Say "No"?

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I have never been one to find it easy to say, “no.”  I’m a people pleaser, I guess, but I find delight in making others happy and I enjoy helping people.  However, I guess for my own sake, and, maybe sometimes even for theirs, I should learn to say ‘no’ but how do you know when it’s the right time to do that?  Here’s some examples of times I’ve found it hard to say ‘no’ to Lynn.
When Lynn got his “back pay” from Social Security.
As is true for everyone, it took us long time to get social security benefits.  We had to wait until we could go before a judge who could see for himself that Lynn was totally disabled. So when he got his check, it was rather sizable.  At that time, he had not been in a wheelchair very long and still had good use of both arms.  Lynn loves to surf fish and he was looking ahead to vacation.  He wanted a way to still be able to surf fish and wondered if there was such a thing as a 4-wheel drive wheelchair.  He did some research and found just what he was looking for…in South Africa.  It could go over sand, climb steps, elevate his seat so he could look over things, had headlights, a horn, ahh…it was cool.  It gave him hope that he could continue to do what he enjoyed most in life for leisure time–fish.  But it was VERY expensive!  It would wipe out all the back pay if he bought it.  He really wanted it. To him it was a symbol that his disability would not wipe out his ability to have fun.  It represented freedom and gave him the feeling of being in control and out-smarting MS.  However, he felt guilty about using all that money for a toy.  He looked to me for permission to buy it.  What did I say?  “Yes,” of course.  How could I take away his hope? It was, after all, his money and not money we had already been counting on to pay bills (though secretly, I had several credit cards I wanted to pay off that I had run up with costs associated with his care). But, the main reason was I just could not take away his hope.
Was that the right decision? Yes for his mental health; no for our finances.  To this day, that machine has not worked.  We took it on one vacation and it would not move in the sand. We  sent the motor back to South Africa in March of this year and have yet to get it back.  Right now it’s a huge obstacle in my living room that has no motor and cannot function at all.  Had I known this, I would have said ‘no’ but not knowing this, his hope was more important to me than the cost.  Therefore, I still think it was the right decision because having hope when you are disabled is essential to life.
Purchasing a New Lift Device
Once again I’m faced with whether to say ‘no’ or participate in hope and once again, I’m going with hope.  Lynn wants very much to stand and if possible to walk, again.  Who wouldn’t want that?  He’s convinced that if he works his muscles well enough that he will be able to do so and that it is not the MS that has caused him not to be able to stand but the deconditioning he experienced when he was hospitalized two years ago for so long.  The doctors can’t say for sure though they believe that progression of his MS is the reason for his immobility.  However, with the change in his diet to following the Terry Wahl MS diet and his dedication to exercise, he truly is moving more than he has in years. Who’s  to say that he could not eventually stand if he was able to recondition all the necessary muscles?
The problem with reconditioning muscles necessary for standing is that there are so many of them.  Doing exercises to isolate one muscle group at a time requires considerably more energy than he has available.  Therefore, once again he has done his research and identified a device that will help him stand with assistance.  It’s called a Rifton TRAM. It allows the caregiver to put a saddle under the hips of the patient and gradually lift them to a standing position.  With the saddle in place, they have support in the amount needed to bear weight.  The advantage of this is that by bearing weight, he can activate more muscle groups plus the stress on the bones, makes the bones stronger.  Osteoporosis sets in when there is no stress to the bone and that causes bone deterioration which makes the person more susceptible to fractures.  So by using the TRAM not only could he strengthen muscles to stand on his own but could help prevent future bone fractures. 
We are in the process now of getting the information necessary to the insurance company.  However, even if they do not approve it, he still wants to buy it because he’s convinced of what he can achieve with it…and who am I to say he can’t?
What’s going through my head though?  Will he be crushed if he cannot stand and go into a deep depression?  Can we afford to pay the full price at a time when year-end bills are coming?  His son’s wedding is in four weeks and we have to prepare and pay for the rehearsal dinner as well as Lynn’s clothing and get their wedding present.  Christmas is coming which means presents.  And of course, there are the multiple bills that need to be paid.  Knowledge of all these needs causes me a lot of stress as I agree to buy the TRAM even if the insurance won’t pay. 
I really want it to work for him but I keep remembering that behemoth wheelchair in my living room and don’t want another useless device in my house so agreeing to this takes a lot of faith on my part.  I know however, that God will take us through whatever lies ahead and if it doesn’t work, He will help us both deal with that.  If it does work, then He will be gloried in helping us to get the device through faith. 
So, once again, I just say, “Yes.”

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Going Out Isn't Easy

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For most people, deciding to go somewhere is simply a matter of making the decision to go and then going.  For people who are mobilized through the power of a wheelchair, that process is a little more complex.
Lynn and I have not been to church since he was hospitalized almost two years ago.  He is now stronger and he is starting to adapt a bit better to the Rebif shots so we are considering trying to make a trip to church.  However, for us, that takes a lot of planning and foresight.
1.  What will he wear?  Lynn currently dresses for comfort and convenience.  Comfort related to the movement of limbs that need to be positioned, careful selection of where seams occur (since sitting on one for long periods when you cannot shift yourself is very uncomfortable), and something that is not binding, scratchy or constricting.  Usually he wears a long sleeve T-shirt and compression shorts with knee-high toe socks.  Not the most fashionable outfit but very comfortable and functional.  The other consideration is the ease for intermittent catheterization or if he’s using an indwelling foley, location of tubing and bag. Since he wears his same outfit to doctor’s appointments as he wears at home, he has not had on a pair of dress paints since PH (pre-hospitalization).  Does he have a pair that fits and could be comfortable for at least three hours?  Would they easily accommodate catheter needs?  That is yet to be determined.
2.  Bladder needs.  If we are making a trip to the store or doctor’s office, I take catheter supplies and cath him discreetly in the van or public restroom (if the location has a unisex and private restroom available.)  If we go to church, that’s an issue. He can’t leave in the middle of a service to be cathed; that would be disruptive.  However, he hates wearing an indwelling catheter in public with a tube leading to a bag of urine.  It’s embarrassing for him and it grosses some people out to see it–plus it makes him appear sick.  He isn’t sick; he’s mobility challenged, so to speak, but otherwise not ill. He doesn’t want those sympathetic, pity-type looks.  He wants to be viewed as whole and functional.  He doesn’t want to be written off as not being able to contribute or considered a subject of pity.  The urine bag represents that for him so it’s a struggle to make the decision to go somewhere like church with an indwelling catheter in place… though practically speaking, it’s the best option.
3.  Accessibility.  Can we get into the building and once inside navigate to where we need to go?  Before going anywhere, I usually like to do a dry run to look to see where the handicap parking is located, do they have ramps, elevators or stairs, etc. You would be surprised at the locations that you cannot access.  For example, we went to a lawyer’s office that had the required slope to the sidewalk so he could get to the front door; however, the slope was at the end of a sidewalk.  The sidewalk ran in from of parked cars.  On one side were cars and bumpers that extended over the sidewalk; on the other side was loose rocks used in landscaping and a significant dip off the sidewalk into the rock.  As he attempted to negotiate the sidewalk and move around the cars extending over the sidewalk into his path, his wheelchair wheels went over the edge and his chair very nearly toppled over into the rock.  I had to go inside and get the lawyer to help me lift him and his chair back onto the sidewalk.  Then we proceeded to the front door which was a good three inches above the sidewalk.  His chair can’t make it inside so we met in our van.  You would think a lawyer’s office would be better equipped. However, we are often surprised at who is not equipped.
Case in point–when we went to the Social Security Disability hearing in downtown Richmond.  I was amazed that there was no disabled parking available except down a step hill.  There was no curb slopping directly in front of the building.  I had to unload him and his wheelchair (that was before we got the wheelchair van and was using a manual chair) into mid-day traffic!  The entrance doors were not automatic and neither were the bathroom doors in the SS office!  Again, you would think a place that caters to the disabled would be better equipped!
Now back to my plan to go to church.  Our church is an old building.  It has an elevator but it’s small.  To get to the sanctuary, you enter the wheelchair into the elevator through a side door, then it goes up one floor, but the exit is at a 90 degree angle to the entrance door.  It’s nearly impossible to maneuver a manual wheelchair with a large man in it into the elevator and out the door one floor up.  There’s no way to get his powerchair in there with him in it due to the leg supports and foot pedals extending too far out.  So if we go to church, we will have to use a transport wheelchair.  The transport wheelchair is not designed to adjust in the ways he needs to remain comfortable sitting for an extended time.  I’ve considered putting him in the manual chair and trying to send the powerchair up without him in it but even with all limb supports tucked in close to the chair, I’m not sure we could maneuver the chair out of the elevator. If he’s uncomfortable, he will not be able to focus on the sermon or enjoy the fellowship so we have to take that into consideration.
4.  Finally, germs.  He’s very susceptible to infection.  He has an autoimmune condition, after all, so his immune system doesn’t function properly.  If he gets a cold, or heaven forbid, the flu or a GI virus, it could put him in the hospital and all he has gained since his last hospitalization could be lost again.  Therefore, once the cold weather sits in and people start spreading those nasty germs again due to being enclosed in crowded places, we will have to avoid public areas. I’ve jokingly told him I would put a plastic suit on him so he could shake hands and hug people but that might not be the most comfortable solution either.
So, we are not decided about going to church tomorrow.  If we can find clothes today, figure out the catheter question and get the backup plan in place for a wheelchair access, we might get there.  It would be nice to hear the choir and fellowship with the congregation.  We miss seeing them and being a part of worship but we are fortunate that if we can’t work out the process, we have the sermons online to fall back on.  Keep your fingers crossed that we will make it in!

Going Out Isn't Easy Read More »

I DON'T WANT TO BE A MAN!

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As a caregiver, I’m asked to assume many roles–comforter, nurse, counselor, banker, chauffeur, and many others; but the one role that I really hate is being the man-of-the-house.  I’m sure the same holds true for men who are caregivers to women.  I would venture to say that most caregivers are satisfied with their God-given gender.  I know I am.  I like being a woman accepting both the bad with the good.  It’s a role I know how to do since I’ve been this way for 55 years.  On the other hand, I was not born a man and I do not have any desire to become one, compete with one, or assume the responsibilities of one, but that’s what I’m asked to do at times.
What caused me to get on this soap-box you may say?  My car.  I went out to the car while my step-son was here to stay with Lynn so I could go to the grocery store.  When I climbed in and reached up to adjust my rear-view mirror, it was not there.  Instead, there was a cord hanging down with the mirror at its end and a black bar in the seat beside me.  Needing to get to and from the store quickly, I left it all there and took the van instead.  When I got back, I told Lynn that I would need to call our mechanic on Monday to get him to fix the mirror on the Impala.  Lynn’s response was, “You don’t need to get Ronnie to do that, you can handle that yourself.” He then proceeded to tell me how simple it was to take the mirror apart and glue it back in place. 
Now any of you men out there who have ever repaired a mirror that has come unglued will realize this it really does not take a rocket scientist to repair this situation nor do you have to know how to tune an engine or use a lot of tools.  You’re probably shaking your heads saying, “Yeah, it’s a five-minute fix.  Don’t pay a mechanic to do that.” That was Lynn’s opinion, too.  Mine was, “well if it’s so easy, then you go out there and do it.” 
Ouch!  Not very sensitive of me, I admit.  My purpose was not to make him feel bad about not being able to fix the car but to instead emphasize that while it’s easy for some people but not for everyone…including me.   Perhaps it IS so simple a process that even I could do it, but I DON’T WANT TO KNOW HOW TO FIX MY CAR! 
In exasperation, I declared, “why do I need to make a special trip to NAPA (which is next door to our mechanic) to buy glue, then figure out how to disassemble the casing (or whatever) on the mirror mount, glue it and then reassemble it all, probably getting frustrated and stressed in the process when I can take it to Ronnie and he can do it in five minutes, on the first try?”  Sure I could save some money.  I might even feel a sense of accomplishment for repairing it myself BUT I have enough to do with what I have to keep up with every day. I don’t want to learn something new.  I want to go see Ronnie and have him fix it.  He’s a mechanic and a good one; let’s let him have the business, okay?
I do realize, it’s really not about fixing the mirror.  What I’m upset about is having to learn to do things my husband used to take care of so easily.  He was a carpenter.  He was very good at doing repairs to homes and vehicles.  He knows his stuff so well that his first response is to tell me I can fix it myself with him telling me how.  What usually happens instead is that I get stressed and frustrated and he gets stressed and frustrated–for different reasons–and neither of us is happy. I may eventually get the thing fixed but I resent having to do it. 
There…that’s it.  I resent having to do it.
I resent the fact that I have to be both the woman and the man of the house.  I felt that way some when I was divorced because I had been left alone to fend for myself, but now I have my spouse who wants to help but can’t.  He gets frustrated and angry because he’s not able to help me. Then he feels depressed and inadequate because he sees me struggling to do it all.  I’m juggling so many plates in the air at one time that I can barely keep them going before they all fall down.  He hates to ask me to do one more thing but knows that if he could just explain it well enough, then he could still be useful by saving us money on repairs. But then if I take on the new task, nothing gets taken away; it’s just one more thing to do so I debate, “do I try to fix it with his help or call someone else for assistance?” Lately, I’ve been calling more because I realize I just can’t do it all and I don’t want to be the man anyway.
There are times I swallow my fear of failing when something needs to be done and I try to do it myself.  When I succeed, I admit, I feel proud but I’ve learned I have to balance my life.  Sometimes, it’s best just to ask for help, so come Monday morning, I’ll be making that call to Ronnie, “Hey, can you fix my mirror?”

I DON'T WANT TO BE A MAN! Read More »

There Go the Apples!

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The life of a caregiver and their “caree” is always in such a delicate balance that I think of that old saying, “don’t tip over the apple cart.”  When I hear that analogy, I have a vision of a small cart piled high with apples, holding its own until someone puts one too many apples on the pile, and then the whole stack comes tumbling down…or maybe it’s similar to a house of cards?  Not sure which but I do know that it doesn’t take much to upset the balance.
In our world, balance is the secret to having a good day.  There needs to be a balance of sleep versus awake time; my work and his routine; his needs and my available time.  There also has to be an emotional balance.  We can cope with the routine aches, pains, fatigue, and malaise but throw in more pain, fatigue, frustration, or sleep deprivation than usual then the balance is gone and we have to work toward establishing equilibrium again….whatever that is on that particular day.
What threw us off this week was Lynn’s powerchair.  We’ve known for some time now that the motor was sounding as if it was going to go out at any time.  When we checked with our “chair repair man” however, we found out that insurance would not pay to have it replaced until it actually went bad. I know that motors are expensive (over $1400) so I understand that the insurance company doesn’t want to replace one unless they know it’s essential, but obviously, they have never had to survive a broken wheelchair!
Lynn’s powerchair is the Cadillac version.  It has three speeds, the legs elevate, and the chair tilts, among other things.  He uses the leg lift and the tilt function off and on all day to achieve comfort. When his legs get stiff, he elevates them to different positions.  When he scoots forward after a while and ends up sitting too far forward, he tilts back and gravity helps him slide back so I don’t have to lift him. These are just two of the maneuvers he does with it all day but there are many more.  Suddenly on Wednesday, he goes to tilt back to adjust his position and there is no response!  Fortunately, he was not tilted back like he was being launched into space; he was on the ground; but the impact of losing “tilt” was enormous for his quality of life. 
Since he could no longer tilt, he could no longer help me in shifting his position himself so I had to lift him more; therefore, my back is more sore.  He could not position his chair in the slight tilt needed to keep his knees from hitting the keyboard on his computer when he worked. It interfered with his comfort in sleeping (he sleeps in the chair), his exercising, his moving from place to place with his legs dangling, and so much more…but the worst was that it keep him from being able to shift his weight as he sat for hours.  By not being able to shift slightly ever so many hours, he experienced “butt fatigue” so he could not get comfortable.  His buttock skin stayed compressed longer so it is redder and he now has a couple of top layer skin tears.  There was even more impact than this but that’s enough for now. Let me just say that it was traumatic….for us both.
In our house, “if Lynn ain’t happy, nobody’s happy.”  When he’s uncomfortable, he looks to me to find a way to make him comfortable which means constant interruptions.  At times he gets angry and frustrated but that blows over.  What is worse is the sadness and worry in his eyes.  He wonders how long he will have to suffer and what the impact will be…because when the balance is off in an MS patient, bad things often happen.
Fortunately for us, it didn’t this time.  I cheered with joy today when the doorbell rang and it was the repair man with a new motor. We were both very grateful for his ability and house call.  The chair is now fixed; Lynn is comfortable again; and I should be able to get his poor butt back to health without too much trouble.
So once again, balance is restored.  We both prayed for God to help us during those hours of waiting for the repair man…and he did.  We worked together to make Lynn more comfortable and to reduce the discomfort as much as possible. … and where we could, we joked, or made light of the problem.  Using humor, seems to lighten the load so we try that out when we can.  Sometimes it works and sometimes it falls short, but most of the time we have at least a few minutes of respite to forget the seriousness.
So anyway, watch the apples you put on the chart.  Try to keep a balance.  When the focus shifts to the front, then try to lighten the back and get back the balance.  It helps to make the waiting time go much faster.

There Go the Apples! Read More »

So Many Choices

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Have you ever stopped to think about how many choices you make in a day? Mine start before I open my eyes

  • Wonder if Lynn will know I’m awake if I pretend to still be asleep?
  • What time do I really have to get up to be ready by xxx?
  • Do I want to get up now or just lie here?

Those are simple choices without much consequence.  Then as the day wears on, more difficult choices have to be made

  • Do I take this call that’s probably from work or just let it ring while I put Lynn in the bed?
  • I’m hungry but if I heat my food up now, he’s probably going to need to be cathed soon so it will get cold?
  • I really need to go to the grocery store but he’s so tired and feels so bad can I make it another day without xxx?
  • Do I agree to come in for the meeting or try to arrange it by conference call?

Those type of choices take more thought and calculation so the difficulty level is slightly more, but what I’ve encountered this week in talking with others who are caregivers is that often the choices are much more difficult and have a potential to deeply affect many.
One person I spoke to was trying to decide whether to limit the number of hours they worked in the office by going home at a certain time each day and hopefully finishing up from home.  While that sounds like a simple decision to make, if you’re a manager in an office and a crisis occurs, you have responsibility to see that it gets addressed.  If you say, “I have to go home to feed my xxx,” then you risk being viewed as being unreliable or not caring about your job. 
Those who are not caregivers don’t realize the internal turmoil that we caregivers often go through each day.  Each decision we make impacts not only ourselves but the one we are looking after and sometimes others as well.  For example, in my job I offer guidance to managers on issues often related to conflict or safety.  I often have to choose when to make a call or check for messages as opposed to answering a “call” from “down the hall” related to a comfort need.  While I often try to do both at the same time, there are times that I need to concentrate solely on one or the other.  In those situations, someone has to wait so I have to determine whose need is greater at any given moment and who might be at greater risk of harm if I don’t choose them? Making that decision often produces tension and anxiety into my day. But even when the decisions are not as potentially risky, every time I have to make a decision, it seems something has to be postponed or denied while something else is addressed. 
Do you ever get tired of making all the decisions?  I do.
On the other hand, making the decisions gives the decision maker power.  Poor Lynn is totally at my mercy to make decisions in his best interest.  Our relationship has to be solid so that he can completely trust that I will consider what he wants and do what is best for him, if possible, or as long as no one else is hurt.  I guess that’s one reason why when I make a decision that does not put him first, I have a twinge of guilt.  He doesn’t get to have the choice; I do.
There are times though that the one being cared for gets to have the final say.  I think about someone I know whose husband had to have his larynx (voice box) removed, shortly after suffering a stroke which paralyzed in his writing hand, and affected his eyesight.  He had virtually no way to communicate his wishes.  He made the decision to die.  He stopped all medical treatment.  He was of sound mind.  Faced with a lifetime of not being able to communicate, read or write, he just decided he had had enough and was ready to go home to heaven. His decision…not hers and she had to honor it–that’s tough.
As much as we might get tired of making decisions, it’s one of our most important functions as a caregiver.  We need to know what the person we are caring for values in life; what their personal preferences and choices would be in most situations.  Then we need to respect that choice even if it’s not what we personally would want.  This is especially difficult when you don’t agree with the decision or the decision adversely affects you in some way.  I’m thinking now about a conversation Lynn and I had today.  He’s still feeling lousy from starting Rebif.  I told him I thought that if he wasn’t feeling better by the end of summer, he needed to come off it.  He said he planned to give it a full six months which would be closer to the end of October.  I realize he needs to make that decision even though I, too, have consequences from his taking the medication (he feels worse so he needs more help, he’s depressed and angry at times, and I just hate to see him feel bad every day all day).  So sometimes not making the decision can be just as hard as making it.
One other decision, I recommend you make.  If you haven’t already, ask the one you are caring for to make you his/her medical decision maker in the event he/she can’t make their own decisions.  If you’re the legal next of kin maybe it’s not as important, but I’ve found that even now while Lynn’s perfectly able to make decisions on his own, that document gives me credibility when I’m talking to his medical team about options or trying to obtain information.  I highly recommend you get that signed in advance and give the medical team a copy.  It also wouldn’t hurt to go ahead and designate someone on your behalf as well.  That would be one less decision that has to be made later on….

So Many Choices Read More »

"Cut! Take Two…"

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In the early days of my journey as an MS Caregiver, Lynn would fall, or we would get into a situation that was difficult and we would look at each other and laugh. We coped with a lot of our hardships by laughing at how bizzare the situation would become as compared to our lives pre-MS.  A friend of mine reminded me this week that when Lynn used to fall, I would pause for just a moment and listen, then call out to the back of the house where he usually hung out and say, “anything broken or bleeding?”  If the answer was, “no,”  I would just keep on with what I was doing and never miss a beat. 
I remember how difficult that was at the time–that is, to just let him fall and not immediately go to help.  That took a lot of will power on my part.  Now I find the opposite happening.  He will let me do almost everything for him if I don’t remind him to try it himself first.  I was wondering when that change occurred and I think it happened when he was in ICU for so long.  He couldn’t do anything for himself and got used to me doing everything for him.  Then when he came home, he was still too  weak to do much on his own so I continued giving maximum care.  Gradually over time it became a habit so that now, we have to consciously stop and determine when should I move his arm for him and when should he do it himself?  That was also when I began to tell myself that he was taking advantage of my being helpful.  Or I would say to myself, “he could do it himself if he would just try”…I think that’s also when we began to laugh less.
For example:
I got upset with Lynn this week over something that was absolutely not his fault. I was trying to take some type of device that cuts circles out of wood out of the electric drill.  It was in there very tight and now that my arthritis is so bad in my thumb joints, I have no strength in my hands.  So as I was struggling to get it out, it cut my finger. Just a small cut–didn’t really hurt much, but when Lynn tried to reassure me that it couldn’t cut me if I held it right, my feelings got hurt and I almost cried. I also got aggravated and curt in my comments and with an edge of hysteria to my voice, threw my hands in the air and said, “I just can’t do it.  Can’t you see that I just can’t do it?  I cut myself!  See? Right here. Why do I even try to do work with tools, etc. etc. etc.”  Lynn’s reaction then was to try to do it himself…which he can’t and I’m annoyed that he feels like he has to try and I know that he’s feeling bad because I’m feeling bad and downward we spiral….
Finally, I stop the spiral and explain.  “All I wanted you to say when I got cut was, ‘I’m sorry. Are you okay?'”  His response to that was, “Oh.  Why didn’t you say so?”  UGH! 
Later, I thought about what happened and why and here’s my insight….
When I got cut, the following thoughts went through my mind in rapid succession.

  • “Oops, I cut myself.
  • Oh, no.  Now I have a cut which will burn when I have to wash clothes and dishes in a few minutes.
  • Why do I have to clean up after his friends when they use his tools?  That’s just more work for me.
  • I’m stupid when it comes to tools. If I knew how to work with tools better, none of this would have happened.  I know how to use a drill.  What’s wrong with me?
  • He (Lynn) just expects me to do everything.  He expects me to do everything he used to do plus everything I need to do for him plus everything that needs to be done around the house and work full-time and do it all perfectly.  He doesn’t ever think about what I need.
  • He doesn’t care that I got hurt.
  • He doesn’t appreciate what I do.
  • My life is miserable and it will never be any better.”

All those thoughts went through my head in a matter of seconds.  Based on what I told myself, I went from a simple, “oops, I cut my finger and need a bandaid,” to, “my life is miserable and it will never be any better.”  Now if I had put the brakes on my internal conversation after the first bullet, I would have gotten the bandaid and moved on.  Instead I sulked for a while and made both myself and Lynn miserable for a while. 
None of those things I said to myself other than, “I cut my finger,” were true.  All the rest was just me feeling sorry for myself and telling myself a story to reinforce my self-pity. What a waste of precious time.  If I had instead just laughed and said, “what a klutz,” or “looks like the drill is working,”  I would have felt better in the long run, Lynn would have felt better, and we could have had a fun moment to share rather than sadness and emotional pain. 
So the morale of this blog is, “watch the stories you tell yourself.” 
I’ve got to get back to looking at the funny side of life more often. “Hey, did you hear the one about….”

"Cut! Take Two…" Read More »

911-Do you do catheters?

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One night this week, just about bedtime, I became very nauseated and started feeling really lousy.  It had the feel of when I’m about to have an allergic reaction to something.  I have lots of food allergies and I often find out about a new one though several hours of agony and being tied to the restroom.  I thought it might be that or food poisoning.  Fortunately, it turned out to be neither but it sure gave me a scare.
I, like most people, hate to be sick.  It’s miserable but usually if I have someone to bring me things, I just stay put in the bathroom, often on the floor on a blanket, till it passes.  As I was contemplating possibly having such a night I went between dread of being sick and panic as to what was I going to do about Lynn?
There were several issues.  The most immediate was that I felt like I couldn’t stay up another minute but still had to finish feeding him, giving him his nebulizer treatment, cathing him, and getting him ready for sleep.  With each request he made, I became more and more cranky and desperate to lie down.  I finally did, lying very still, breathing shallowly, and praying I would not be sick.  Thanks, God for granting that wish….
As I lay there in dread, the other struggle was what was I going to do if I did indeed get sick?
1.  What if I needed help?  Lynn is attached to a peddler at night so he can peddle when his legs get stiff. He could pull out of it but he also doesn’t usually hear me if I yell from the bathroom and he can’t get his wheelchair through the door to bring me anything.  Solution:  Take a phone into the bathroom with me.  Plan:  Get a phone for the bathroom permanently.
2.  He needs to be cathed several times a night.  He cannot urinate on his own. If I was too sick to move, who could cath him?  That’s where my mind went to 9-1-1.  I figure if a rescue squad could put in a catheter in an emergency, not being able to empty one’s bladder can lead to one, so the solution is to call 911 to get them to come put in a foley.  Did you know that if a person cannot empty their bladder that after a while they will go into shock?  The urine backs up to the kidney and then on toward overloading the heart and lungs.  It doesn’t happen immediately but it can cause a lot of pain and the shock comes long before the other parts. So I think 911 is a good option.
3.  If I’m sick for hours, I sure am not going to feel like taking care of him the next day. Lord, give me strength!  I know I would try to push through though.  I would certainly have to call for help I expect but there are so many things family and friends just don’t know how to do and I still don’t have an arrangement yet for intermittent nursing help.  Got to get back into looking for that again.
Just so much more to consider when someone is so dependent on you for everything they need.  I also know that emotionally Lynn would be devastated if I was very sick.  He gets so afraid if I seem to be sick or hurt.  He worries about me but he’s also very afraid of what would happen to him.  He says all the time that he would give up and die if I was no longer around to help him.  Talk about pressure…
Anyway, I dodged the bullet.  Whatever was wrong finally went away.  I felt yucky the next day but functional so it was a false alarm, thank God.  So once again we were blessed to avoid another crisis and managed through what we had.  Aren’t we fortunate to have such a caring God to take care of us that way? 
Yes, we are….

911-Do you do catheters? Read More »

Reaching my Saturation Point – at least today

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I guess I think that I can do whatever I sit my mind to and that my body and abilities will fall in line to make sure it happens.  So I strive to be the best manager, employee, mother, wife, caregiver, and friend, I can be. I want to take care of everyone’s needs and solve all their problems and still have energy afterwards to take care of our home and personal affairs.  Well, today I reached my saturation point and had a melt down…and so did Lynn….
If you follow my blog, you know that I offered to start an online “virtual” support group.  The plan was for those who were interested to call-in and we would have a conference call support group. I announced that if there was any interest, I would get it started.  I had a few interested responses so I created a Skype account and ordered a webcam.  The only problem is, I didn’t have time to learn how to use them properly.  I got everything loaded in advance but hadn’t had time to do a test drive, so, I was a little nervous about having the conference call today. 
What also didn’t help was that I was up till 2 a.m. after working till midnight on some reports for work and then getting Lynn and I ready for bed. I slept-in till 10 a.m., but I still should have had time plenty of time to see to the test before 2 p.m. when the call was scheduled.
Only it didn’t work out that way.
Each time I would sit down to pull up the program, Lynn would need something.  Then just as I was going to lay him down for  a nap, my son and his girlfriend came over to see him for father’s day. I haven’t seen either of them in a while and my son had been out of work for a week due to eye problems so I wanted to spend time with them.  While they were here, I put Lynn to bed for a short rest.  Suddenly I realized it was getting close to conference call time.  I put my conversation on hold with my son and went to get Lynn up.  Realizing I was most likely going to be late for the call, I sent an email to the other participant (I ended up with only one person interested in attending the conference call) to say I might be running late before going to get him up.  Sure enough, I was about 15 minutes late getting back to my computer after he finished with all his requests. By that point, the other party was not answering the call (I’m sure she had given up by then and if she’s reading this, I apologize for being so late!)
Since I could not get though on the call, I decided to test the connection and see how well the webcam worked.  I called to the computer in the back room where Lynn was and tried to talk to him.  The audio didn’t work well at all and he could not see the video.  So I tried to figure out how to make the equipment work properly for about thirty minutes, getting more and more frustrated as I did because the instruction book was so difficult to figure out.  Before long, I was ready to through the little camera away. 
Then Lynn needed me to turn off his camera because when he closed down Skype, the camera stayed on.  Well, it didn’t have an off button and I couldn’t find an exit menu for his software.  After spending ten minutes pushing more button, I finally decided to just unplug it.
By that point, I was in tears.
When I get upset, Lynn gets upset because he knows I’m so overwhelmed with all I have to do.  He tries to encourage me but all I want to do is cry.  So, I do, and I feel better, but that’s hard for him to understand. 
Then it’s Lynn’s turn to have a melt down…
Afterwards, I get him settled in his peddler, go fix some lunch, and go dig up some tomato plants that grow naturally near our house and transplant them into a pot on the deck.   I come inside and start to cook Lynn’s dinner when I hear something hit the floor hard in the bedroom.  Doesn’t sound big enough to be him but something obviously hit the floor.  I take off for his room and he’s heading my way in an obvious “mood.”  He looks like a thunder-cloud rolling in from the west. (Remember, I left him attached to his peddler which is obviously not attached now.) 
“What’s wrong?” I say.  He bellows back, “This !%##$%$% seat cushion is tearing up my @### and I have to get off it.”  Then he adds, as he rolls over some of the things he has knocked onto the floor, “I’m so #$%^ tired of being sick and feeling like %^&*(!” Then as he pushes his way to the bed so I can take him off the chair, he runs into the bed, knocks it off the blocks it sits on, and out rolls the knob to this wheelchair I knocked off earlier in the week and couldn’t find after searching for an hour! I yell at him, he growls, …. and then we fix the disrupted room …and our tension deflates.
It was bound to happen.  Being sick for long periods and being confined to being with someone who is sick for long periods takes a serious toll on one’s emotional stability.  Our relationship is like a see-saw.  If one is down and the other is up, we keep moving forward and it works. But when both of us are down, we’re not at a standstill, we’re broken.  Something has to give to take away some of the pressure pushing us down.  For me it was tears and for him it was banging into things and cussing. He needs a punching bag but he can’t punch so his chair and his mouth are his only outlets.  All that pent-up energy has to go somewhere!
So right now we both feel better.  We both “blew” in our own way  or got  our pent-up emotions “wrung out” of us by situations so we’re stable again….and everything’s good.
P.S.
Back to the conference call.  I’ll try it again on July 14 at 2 p.m. eastern standard time.  Send me your Skype contact information in advance if you want to be on the call.  I have some concerns about whether this is actually going to work or not.  I realized today that Lynn’s needs can’t be put on hold while I talk on the computer so being able to set aside a particular time might be a challenge.  Plus I’m a little concerned he might over hear my comments and I don’t want him to do that….Just some nagging concerns I’ve been having.  Let me know what you think, too, about it–honestly.
Till next week,
Donna

Reaching my Saturation Point – at least today Read More »

Live in the Moment

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One of the greatest challenges of living with MS is how unpredictable each moment of your life becomes.  I’ve shared that frustration before but I keep coming back to it because it’s such a constant struggle.  Adapting to it not only means being prepared for the unexpected and being flexible but also being prepared to accept disappointments and to let go of planning and any sense of control.
This week has been that way.  We found out early in the week that Lynn was a finalist in the National Indie Excellence Book Award contest for his book, Rising Tide.  This contest accepts thousands of entries throughout the year and he submitted Rising Tide in five categories.  He was a finalist in the category for adventure. Though his book is usually found in the “fantasy” section , his stories are primarily an adventure. This recognition was particularly gratifying because writing has become his “career,” his daily work, since his MS has progressed to the stage that he can no longer do anything physical.  He has a friend who comes in weekly to type for him and during the week he uses his slow, hunt and peck typing style to market his book to book clubs.  So the first part of the week was “up.”
…but that was Monday, the rest day before his Rebif shot.  The rest of the week he has felt tired and generally bad from the Rebif. Each morning he has the hope that today will be a good day but after exercising, eating breakfast, and his morning hygiene routine, he is wiped out for the day and his strength, stamina, and outlook steadily go downhill. 
Knowing that is how the week had gone, he optimistically made arrangements for a friend to come by this morning at 10 to repair the hole in the wall his wheelchair handles has made when he turns from the hallway into the bedroom (another challenge of being disabled, repairs that come due to equipment not suited to the size of the house or vise versa).  We got up at 7 (we have to have three hours at least to prepare for the day) so he would be ready by 10.  By 9 he had to call and cancel.  For the third Saturday in a room, he just didn’t have the energy to supervise a construction project. 
From Lynn’s perspective, he’s getting sick and tired of being sick and tired.  It’s very discouraging to think that it might take another three months before he adjusts to the Rebif enough that he does not feel lousy all the time…and then there’s the possibility he won’t adjust and it will always make him feel this way.  From my perspective, I know that my ability to plan for work, for vacation, for trips to the doctor, store, library, wherever… is always hampered by how he feels at any given moment.  For example, I just came back from the library where I picked up several books on tape (that’s how I read now since I no longer have time to sit down and actually ready anything).  In order to go to the library and back–a fifteen minute round trip at most–I had to make sure his bladder was empty, he had his liquids beside him, he was comfortable in his wheelchair, he was connected to his peddler, and his TV channel was set to where he wanted it to be; all before I could consider getting myself ready to walk out the door.  Walking back into the house, I yell, “I’m back,” and of course, I hear, “come here when you can.”  He needed another catheterization, his tea was not hot enough, and he was congested and needed nose spray. It’s always something… 
Lynn noticed a commercial this morning where a caregiver for a patient with prostate cancer was talking about her role as a caregiver.  He looked at me and said, “why does she call herself a caregiver?  She doesn’t do half of what you do everyday for me.”  I explained that each disease has its own unique caregiver needs and often the emotional support and managing the home and appointments for someone can also be very demanding even if you don’t have to physically lift, move, feed, bath, clothe, entertain, etc. 
I understand where he was coming from; however.  There are certainly degrees of caregiving just like degrees of being sick. I subscribe to a caregiver online magazine. I briefly look at articles to see what might be helpful.  I know each person’s situation is very challenging and it’s very difficult to be a long distance caregiver to manager situations for a parent or relative in another city or to live with someone who physically is functional but mentally is dysfunctional.   But caring for an MS patient is uniquely challenging, I think.  For most other conditions, you can get into a routine, know from day-to-day what needs to be done, and plan ahead.  For MS, that’s not true.  MS affects so many systems of the body and can be influenced by the weather, an illness, seasonal changes, the time of day, rest, diet, almost anything and whatever that effect may be will impact their bodies either in how they feel or how they function.  Therefore, as the caregiver/business manager/entertainment arranger/homemaker/etc,  you can’t effectively plan hour to hour sometimes much less day-to-day.  For me,that is perhaps the most challenging.
Next week will be our first virtual support group conference call.  If you, too, have similar challenges and would like a place to air your concerns, frustrations, triumphs, and hopes, please join us.  Contact me through Skype.  My ID is MScaregiverdonna.  Send me your contact information and I’ll add you to the conference call group.  I’ll give participants a call around 2 pm EST (give or take a few minutes in case I’m in the middle of a catheterization or something) on Saturday, June 16. I look forward to getting to know those of you who might want to participate.
Till next week….
Donna

Live in the Moment Read More »

Virtual Support Group Update

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I’m finding out that my internet, which is DSL, does not have enough bandwidth for me to do group video conferencing but I should be able to do group conference calls using Skype.  I’m still working out the details and when I have it figured out, I’ll be back to set up a specific time for our first virtual support group. 
I think we’re still on track for sometime in June. Based on the number of people who expressed interest, I think we’re looking at having a small group 5-8 to start with but if it works, I expect that could get larger.  Keep your fingers crossed that I figure out how to make this work. 
If anyone is interested in being a “co-leader” let me know.  There could be times I would not be able to host it and it would be nice to have someone else be the contact if that should occur.  Think about it and let me know.
Thanks
Donna

Virtual Support Group Update Read More »

Sometimes I Feel Like I will Explode

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Pressure.   So much pressure.  …but where does it come from?  Me or “them?”
This has been one of those weeks where I have felt I was under extreme pressure all week.  The week started off with me getting up early on Monday for a conference call that wasn’t actually scheduled till Tuesday.  I needed to get up early anyway in order to have the four hours I need to get ready before I go into work for meetings so it was actually somewhat of a relief to have gotten the date wrong but that meant also getting up early the next day…which I did.  “Issues” started flowing in from work Tuesday afternoon and I haven’t had a break since….
My job can be very intensive.  I coordinate investigations, consult on workplace conflicts, and generally give advise on how to address problems.  Often participants are very emotional and the consultations are intense.  I have to be “on my game,” able to listen for variations of the truth, able to see through smoke screens to the facts, able to determine what laws apply and what solutions might work in a situation based on personalities and behaviors that I rely on others to describe.  Therefore, I need to concentrate on what is being said, how it’s being said, and what is not said to make sure I manage a situation effectively.
Now imagine this…I’m on a speaker phone attending a conference call about some highly emotional issue.  I’m multitasking at my desk, looking up information, referencing reports, taking notes, and planning strategies with the people on the line.  Over the baby monitor on my desk, I hear, “Donna I need to be cathed.”  So I take the speaker phone with me, mute the line, glove up and take care of business, never missing a beat.  Then he mouths, “I need nose spray,”  so I apply the spray, then as I put down the spray, “can you make me some tea?” I continue to carry on my conversation and go make the tea. When I deliver it, his foot has come loose from the stirrups in the peddler so I fix that, his socks need to be pulled up and his shin needs scratching.  I finish all this, still on the phone and go back to my desk.  Fifteen minutes later, “Sweetie, can you come here?” and it starts again.
Some days I do okay with this pace; other days I don’t.  When the issues are intense or the stakes are high, I feel intense internal conflict between who gets my attention at that moment. So far, I’ve managed to juggle it all– I can multitask like you wouldn’t believe, but the pressure is getting to me. Several times this week, I’ve just felt like I could not keep going like this.  I would love to quite the dual role.  I would love to go back to work and have someone else be the caregiver for a while but I can’t afford to do that.  The cost would just be too much so I keep going. I admit there are times I almost wish I would get injured or sick so I would have an excuse to stop for a while.  If that would happen, then insurance would pay for a temporary caregiver at least and the decision to stop being a caregiver, even temporarily, wouldn’t be mine to make.
I am very fearful that eventually I won’t be able to keep up the pace.  What will happen then?  We have a little savings but that would not last long if full-time care was needed.  If we lost most of our resources, then we would be eligible for assistance but I don’t want to lose nearly everything so I can get some help.  If I quite my job and worked part-time, we could not pay our bills.  Lynn could go into a care facility but I couldn’t (not that I ever want him to have to do that) but if that happens, what happens to me, the caregiver, who has burned out, lost their income, lost their home, lost their savings? 
I’m getting morbid and over-dramatic but it’s these type of thoughts that cause the pressure.  I don’t want my worst fears to happen. I don’t want to lose our home or to have to put Lynn in a care facility; nor do I want to lose my job (believe it or not, I really like what I do).  So I feel pressured…pressured to do my best at work so I don’t let down my colleagues; pressure to do my best for Lynn because I love him and am committed to him; pressure to try to be a supportive mother and friend; pressure to make it all work.  Where does this pressure come from?  From me. From my own expectations.  From my own demands to do it all perfectly.
So maybe what I need to do is go find a pin…I think its time to create a small leak.  Just a little leak to reduce some of the pressure; not so much as to make me explode or deflate entirely… just enough to stay afloat like a balloon that has lost its elasticity and becomes almost puncture proof.  That’s my goal. To become a low pressure, rubbery balloon. Sounds good doesn’t it? Or better yet, I guess I just need to turn it over to God and let him handle it because it’s just too much for me right now.  So….God, this is Donna.  Here… it’s yours.  Thanks and Amen.

Sometimes I Feel Like I will Explode Read More »

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?

I Don't Know What I Don't Know Read More »

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.

Why is Getting Help so Hard to do? Read More »

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.

The Secret Life of a Caregiver 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 »

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….

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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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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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