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2012 Blog Posts

What do I do Now?

Following the get-together last Saturday with my family, Christmas was fast upon us two days later.  Christmas Eve we always have our children come over for our family time.  Since the baby was still recovering from his cold, my daughter brought him to our house before heading in for the Christmas Eve church service.  I planned to watch him, cook dinner and be ready for everyone to come back around 6 or 6:30 for dinner.  However, shortly after they left, Lynn started running a fever. While fevers can be a source of discomfort and can make anyone feel bad, for an MS patient, they can be devastating. Between 4 and 6 p.m. his temperature rose to 103 degrees.  Along with the aches and malaise brought on by the fever, his

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Warning! I have a Cold!

Yesterday we celebrated Christmas with my side of the family.  Several traveled about five hours so that we could be together. We had a wonderful time but it almost didn’t happen. Earlier in the month I posted a blog about how difficult it was to choose between caring for Lynn and helping out my daughter who was sick and whose baby was very sick. After reading that post, my loving, self-sacrificing, 80-year-old parents jumped in their car and drove five hours to come help her out so I would stop worrying about her.  (See where I get my caregiving tendencies?)  It was such a relief to have them here so I knew Sarah could get some much-needed rest.  They kept the baby at my house, and I could help from across the room or

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Pass It On

One of the hats I wear as the caregiver support for Lynn is to help him promote his book.  As I have mentioned before, when he no longer was able to work, he began to write. His first book, “Rising Tide,” was published a couple of years ago.  Those who are not in the publishing industry assume that the publisher promotes the book.  Not so these days as the only books that are advertised or extensively promoted are those from already known authors. Therefore, Lynn spends a great deal of his day contacting book clubs who might be interested in reading his book and offering them a free promotional copy.  He also writes a blog about writing and interacts with book sellers. One of his contacts who writes a blog about authors

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Whom Do I Choose?

I am feeling so frustrated tonight because my good sense tells me not to do something I really want to do but my heart is longing to do it.  Here’s my dilemma.  I want to be a caregiver to two different people (actually three) and it’s tearing me up that I can’t. My grandson is very sick tonight.  It probably won’t amount to anything but he’s only six months old and has a very bad upper respiratory track infection.  He can hardly breathe, his mucus drainage is so thick he’s choking on it, and he can’t drink (he’s only had nine ounces of milk today) so he’s becoming dehydrated.  His mother (my daughter) is scared to death. Her husband’s cousin died at this same age of an upper respiratory infection and she’s

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Transition

I got a text message early this morning from my son saying that his fiance’s mother, Leslie, was beginning to transition toward her death.  I hadn’t heard dying referred to in that way before but it made a lot of sense as I thought about it.  There are specific changes that occur as our bodies begin to stop functioning and prepare us to die.  For those who are followers of Christ Jesus, it prepares them for accepting their heavenly bodies and begins the process of ashes to ashes; dust to dust.  Tonight at 10 p.m. she finished her transition and she has now gone home to her heavenly family. Anticipating his call (admittedly, not quite this soon) that she had died, I’ve thought a lot about how we transition our lives. 

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Hope you Enjoyed Thanksgiving

I am very fortunate that almost everyone in my husband’s family likes to cook because I don’t.  I enjoy eating but I eat to live; I don’t live to eat…except maybe for desserts.  Early Thursday morning, my wonderful sister-in-law arrived at my house to start the Thanksgiving feast.  She did the entire meal, start to finish, and it was absolutely delicious.  I am so thankful that she will do this for us.  Lynn cannot access anyone else’s home in our family and therefore, it would be difficult, if not impossible, for us to go somewhere else other than maybe a restaurant. This year we also had the challenge that my father-in-law is now blind due to macular degeneration. Therefore, we have learned to be creative. At one end of the

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Guest Blog

The following story is shared by one of my readers.  Though his wife did not have MS, his struggles as a caregiver are much like ours.  My Struggle and Experience as My Wife’s Caregiver by Cameron Von St. James After my wife Heather was diagnosed with mesothelioma, I became her caregiver, and experienced all the struggles that go with it. Many times, my wife has tried to bring up the experience, stating she cannot imagine what I had to face, but I’ve only spoken to her about it once. Now I hope to share a bit more on my experience to help others who are facing similar difficult battles with disease. Our only child Lily was born just three months before my wife’s diagnosis. She was a blessing, and we

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Quiet Time

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

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They're Married and Lynn was There for it All

Before every big event, there is always the fear that MS will get in the way of its enjoyment.  I am pleased (and relieved) to say that did not happen during any of the festivities associated with Lynn’s son’s wedding.  For days prior to the event, Lynn would comment on how he hoped his Rebif shot would not make him so miserable that he could not enjoy any of it.  He was determined to be there and I expect he would have been there if it meant going by ambulance but fortunately that was not an issue. Friday was the rehearsal lunch at our home.  Once again our church came to our rescue and a group came and set up for the meal, while others prepared the food and brought

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There are Worse Things Than MS

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

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National Family Caregivers Month – Background

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

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Information from WeGO Health community

This announcement was sent to me for possible inclusion on my blog.  If you’re interested in joining the WEGO Health community www.wegohealth.com , it seems to have a lot of resources. Announcing the 2012 Health Activist Awards! We’re excited to announce the start of the WEGO Health Activist Awards Nominations!  This year, we’re extending the nomination period and we’ve added some exciting new award categories but we’re hoping you’ll take a moment to recognize all of the people who make a difference, offer support, and share information in your online health community.  Not sure who to nominate?  Recognize your favorite blogger or tweeter, the person who always make you laugh, the community member who’s always there to offer support, or those who inspire you to do more – we’ve got an

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"I Know Someone With MS…"

When I tell friends, family, acquaintances, etc. what I’m up to these days (i.e., being a full-time caregiver for my husband while working full-time from home) it’s amazing how many people either have someone with MS in their family or know of someone with MS. What’s even more amazing, however, is how different each of their stories are.  Often how someone views the condition is directly related to who they know that has it.  For example: “My friend’s sister has MS but they’re fine” In this situation, they really have very limited information about MS because as we know, no one who has MS is “fine.”  Each MS victim struggles with something periodically, especially during periods of stress. Often they battle fatigue, heat sensitivity, weaknesses in functioning in some aspect of their lives

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Hygiene and Grooming – Sweating the Small Stuff

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

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Just Say "No"?

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

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Supporting Lynn in his Work

One of the many challenges I face each day is how to devote the time needed to meet the obligations of my employment and give Lynn the care and attention he needs.  I’ve found that whenever he calls me back to his room for assistance during the day, if he’s tired (and what MS patient is not tired most of the time), he will say, “while you’re here, would you ….” Often that request is related to typing an email response for him or copying something off a web address.  Therefore, I find that in addition to my own job, I often am assisting him with his.  Recently, though that has gotten better. My daughter has decided to be a stay-at-home mom.  That’s great news and I’m pleased that she

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Working from Home

Someone asked me recently about working from home.  They, like me, had someone they wanted to care for but needed a full-time income.  Knowing that I worked from home, they asked me what type of jobs would allow that option.  I’ve done a lot of research into telework or telecommuting.  Having worked full-time from home for the past year, I want to say it’s not as easy as it would seem.  If you are thinking about working from home, consider the following. What Jobs can be Performed from Home? The first consideration is the amount of interaction you need with others to be able to do your job well.  Do you need to be able to talk to people face-to-face or could you accomplish as much using a phone, email, or maybe a

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Rush to RUSH

Lynn’s favorite band every is RUSH.  For years, him, his son, his son’s friends, and Lynn’s friends have bought tickets to their concert as soon as they went on sale and anxiously awaited the day they could see them live.  It used to be a fairly big production with a group of 5 or 6 guys spending the night at our house after the concert and reliving the experience while they blasted out RUSH songs as if the concert was still in progress.  He always wanted me to go with them but I am not a big fan of concerts and had rather listen to Christian rock or country music so I would just smile and decline. He finally convinced me to go to RUSH’s 2010 concert.  By that time I had heard their

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The Healing Touch of a Baby's Smile

Shortly after we returned from vacation, my daughter started having a lot of right-sided pain just under her ribcage and nausea. After a week, instead of it getting better, it was getting worse.  She called me to “consult” on what I thought it might be (nurse to nurse).  I ruled out liver problems, thought it might be muscle irritation but knew she needed to get it checked out.  I told her to bring me the baby (2 1/2 month old Elijah, Eli if short) and go get it checked out. Being that it was the weekend, she and her husband went to the emergency room. A quick work up ruled out anything serious but they suggested her gallbladder might be the issue and recommended a follow-up to her primary care doctor. Her

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Going Out Isn't Easy

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

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I DON'T WANT TO BE A MAN!

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

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God's Blessings

Often my journal entries discuss the challenges of being a caregiver but today I want to share a blessing–my church family. Before Lynn was diagnosed with MS, he and I were very involved in our church.  We both were in choir; I helped produce drama enactments to support the sermon;  Lynn played drums for the praise band; we both played  hand bells; and we both were in dinner theater productions.  Three years ago, Lynn had to drop out of most of the activities he did due to fatigue and loss of coordination and strength.  Two years ago, I had to drop out due to my need to be home to care for him.  Since December 2010, neither of us have been able to attend church but are blessed to be able

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Was That a Vacation?

We were on vacation when I wrote this blog this week. I was not able to post a blog this week because, unknown to us, the condo we use changed their practice this past year and each home owner is now required to provide their own internet service to their renters.  The home-owner for the one we rented, apparently decided internet access was a non-essential amenity for their guests (I found out later that most initially believed that to be the case but most are changing their minds now with all the complaints).  Fortunately, the condo office allows you to come to their lobby and “borrow” access while there. Unfortunately, for some reason, I could not get my computer to work with their service (probably my limited knowledge of computers

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There Go the Apples!

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

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So Many Choices

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

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Reminder, Support Group Call Next Saturday

I’m going to try to do the Skype conference call thing again next Saturday, July 14, at 2:00 pm. eastern standard time.  If you want to participate, send me you Skype contact information by next Friday and I’ll call you at 2.  My Skype ID is MS Caregiver Donna. Till next week…

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"Cut! Take Two…"

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

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911-Do you do catheters?

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

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Oh, no. Is that a skin tear?

For most of us, if we get a cut or scrape or even a deeper laceration, we start to heal immediately and in a few days or weeks, it’s much improved.  Skin has miraculous healing powers.  Immediately after a cut, the body clots the bleeding, sends white cells and special chemicals to the site to fight off infection and within hours new cells start replacing those that were lost.  It’s awesome how God created such an amazing process for regeneration within our own bodies that takes place day after day. When everything in the body is working properly, skin breakdown is not big deal, but that’s not always the case with an MS patient.   For one thing, MS is an auto-immune condition meaning the body already has it out for itself. Therefore, it’s

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Reaching my Saturation Point – at least today

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

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Live in the Moment

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

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Group Conference Call

Reminder:  If you want to participate in the virtual support group conference call next week (June 16 2 pm EST) you need to send me your SKYPE information prior to the call so I can include you in the group call. My SKYPE ID is MScaregiverdonna.  Send me an invitation to become your contact and then I’ll add you to our group.  Looking forward to connecting with you next week for our first Virtual Support Group.

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The Blessings of Children

May 27 at 3:51 p.m., my daughter gave birth to a beautiful son, Elijah Gregory–Eli for short.  I was fortunate enough to share in the experience with her and her husband and at the moment of Eli’s birth, my daughter weep tears of joy, as did I.  The decision to have a child was not easy for her.  Though she does not have MS, she has a chronic health condition that has dominated her life (and mine) since she was five years old.  The condition has required multiple medication adjustments, much lost time from school and work, and interfered on more occasions than I can remember, with being able to enjoy plans made.  It made her different from her peers, which created many difficulties for her as a teen.  There have been

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Depression

Have you seen that commercial that asks, “Where do you hurt when you have depression?” and the answer is, “Everywhere.”?  That came on while I was helping do something this week for Lynn and suddenly I realized that maybe I have “misdiagnosed” his symptoms.  Lynn started on Rebif about two months ago.  Over the past month, he has become more and more tired the day after his shot but even between those times, he feels bad.  It’s not aches and pains but more of a heaviness–the weight of not feeling good.  He has also gotten very irritable, more impatient than usual and, though he controls it well, he gets angry very easily.  I was talking to his primary care doctor about something else and she asked how he was doing

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Virtual Support Group Instructions

Great News.  I have Skype set up and we can do conference calls, not group videos (though you could if you have that option in Skype, I just don’t have the bandwidth to do it).  Here’s what you need to do to participate: Set up a Skype to Skype account.  It’s free.  You will need to have the capability to talk through your computer so a webcam with audio capability would be helpful.  Some laptops already have them installed so you’ll need to figure that out on your computer in advance. Once you have your Skype account set up, you need to send me a contact request.  My Skype name is MSCaregiverDonna.  You can just click on “Add Contacts” and type that in as my Skype name.  That will send

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Virtual Support Group Update

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

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Time or Just One Continuous Move Forward?

Are you the type of person who keeps a calendar and checks their watch several times a day?  I am.  Since I can remember, I have been a clock watcher. I always had a sense of what time it was and what day.  Not that I was always punctual but I always had my schedule somewhere in my subconscious.  I’ve found that keeping track of time is one of the things that seems to be “slipping” as a priority now that I’m a full-time caregiver.  I don’t even wear a watch anymore! When I first started taking care of Lynn full-time (meaning doing almost everything for him) I tried having a schedule. I even wrote out a treatment schedule and recorded when I gave certain treatments and when I did catheterizations,

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Sometimes I Feel Like I will Explode

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

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Virtual Support Group by Skype?

  When I first started this blog, my intent was to create a virtual support group; a place on-line that people, like me, who could not get away to attend support group meetings could get together on-line.  While this blog has allowed me to make many new friends and to gain support periodically from each of you, it doesn’t allow for that “personal” touch.  But I have an idea that might just work….let me know what you think. Have you ever heard of Skype?  Skype is an online phone service that is free and allows you to both talk to and see whom you’re calling. Lynn uses it to speak to book clubs about his book and while it’s not always the best picture (depends on the equipment being used of course),

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Financial Support for Home Care

I’ve been thinking a lot lately about respite care.  I was asked to participate on a committee to look at creating a voucher program in Virginia for caregivers to obtain a small amount of financial assistance so they could afford respite care. I think the idea is wonderful.  So many of us need a break but don’t have close friends or relatives who can provide relief or don’t have insurance that will pay for it.  Unfortunately, funding will be limited and the need is great so many people will still have needs that will go unmet. I was a consultant on the Committee, essentially one of the voices of those in need who could offer comment about the direction the plans were going.  As I listened to the experts discuss which

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I Don't Know What I Don't Know

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

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Patient Advocate

Out of the blue today, Lynn asked me to write about advocacy. He said, “please stress to your readers the importance of having an advocate or being one for yourself,” so here goes. When Lynn and I first got married, we were both VERY independent.  Both of us had been married before and both of us had learned to survive as single parents and single individuals. Therefore, unless we needed someone to drive us home after a procedure, we never accompanied one another to medical appointments. That was fine at first but then I became very frustrated with that approach because Lynn’s approach to health care is “the less I know the better” or “ignore it and it will go away.”  Mine, on the other hand, is “tell me absolutely everything,

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Keeping up with the Paper Work

If you are a full-time caregiver, or even part-time but the primary person responsible for someone else’s care, then you know all about paper work.  It’s another one of the unpleasant aspects of caregiving that we have to endure but are all too often unprepared for or unfamiliar with.  I’m very fortunate in that I have a healthcare background.  I understand the reason behind all that information “they” gather and why it has to be reviewed every visit.  I also know about insurance to a limited degree but more about that from personal experience than professional.  All that being true; however, it still is difficult to keep up with all the paper (virtual or hardcopy) and still quite frustrating at times. One of the things I did early in my

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Why is Getting Help so Hard to do?

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

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Free to a Good Home…with patience

Lynn has started a new MS medication–at least new for him.  It’s Rebif, an interferon beta-1a therapy that is supposed to slow disease progression, reduce development of lesions, and reduce exacerbation occurrences.  Sounds like a good drug but it’s also used primarily for relapsing remitting forms of MS and Lynn may be into secondary progression now, so we’ll see…. What I do like about it is that he only gets it three times a week instead of every day.  That’s a nice difference from Copaxone. Now, for the other side of the coin and why I want to give HIM away to a good home! Due to the side-effects of the medication, the dosage is titrated upward (i.e., gradually increased over time so that the body has time to adjust to it

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Going to the Movies

I have always enjoyed a good movie. It’s one of the things I miss about not being able to get out and go places now.  However, you don’t have to go out to see a movie any more; you can now do it in the comfort on your own home and with the benefit of a “pause” button.  What would we do without “pause”?  We rented from “the big red box” a movie called, “We Bought a Zoo.”  Fantastic movie!  I highly recommend it.  So after I gave Lynn his shower, got him dressed, took my own shower (which I find necessary every time I give him one), got him settled with his peddler, and gave him his afternoon meds, I put the DVD in to watch.  About 10 minutes

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Multitasking

When I was trying to decide what to write about this week, I was having a hard time coming up with something unique.  I’ve touched on many of the hardships and challenges associated with being a caregiver but as I look out the window at all the new growth for spring, I am also thinking of all the benefits. Some of the challenges we ensure also have benefits associated with them.  I realized early in my life of caregiving, actually when I was acting as both a Mom and caregiver for my child who had a chronic health condition too, that God prepares us for the challenges ahead without our realizing it.  It seems in looking back that each difficult road I’ve traveled helped prepare me for something ahead that

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The Secret Life of a Caregiver

 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

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Short Trip but Major Planning

If you are a caregiver for someone who is totally dependent on you for everything, you know that there is no such thing as a “quick run” into anywhere when you take the person you are caring for with you.  Today, Lynn and I had an appointment with an attorney to sign our wills, power of attorney, and medical decision maker documents.  The location was approximately 35 minutes from our home so I estimated we would be gone two maybe two and a half hours.  I also planned to stop at the post-office, return something to the drug store, and stop at the bank.  Here’s how it went….. The appointment was for 10:30 a.m. so we got up at 7:00 to get ready.  After cathing Lynn and arranging things within

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Grieving over things lost

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

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