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Pass It On

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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 is featuring him and his book this week.  Check it out!   This is a link, www.kaitlinmichelle.com, to a feature article which includes a short interview with him as well as an except from the book, the official trailer, and a short bio about Lynn.  Due to the limitations he has from MS, Lynn is limited in marketing his book to the use of social media.  He is trying to start a grassroots movement to promote his book, “Rising Tide.”  I hope you will check out the article and pass it on to others who enjoy reading.

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National Family Caregivers Month – Background

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

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

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

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Keeping up with the Paper Work

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

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Connect the Dots

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

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Family of bloggers

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

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Happy Anniversary

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

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Switching Gears

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Medicaid eligibility is based on income and asset levels rather than age.

One of the challenges I face as a caregiver is switching gears in mid-thought.  Of course, being a mother certainly helped prepare me for that duty but I always switch reluctantly.  I’m the type of person who likes closure.  I like to start a project, focus on it, get it done.  Not being able to finish something frustrates me considerably.  Needless to say, I’m frustrated a lot.

I work from home as I’ve mentioned many times before.  After I get Lynn and myself ready for the day, I “go to work” at my computer.  I have a job that takes a lot of concentration so when I’m working on a document or trying to advise someone over the phone, it’s difficult when my concentration is broken.  I’ve become pretty good at continuing a conversation on the phone while I insert a catheter, put him to bed, feed him, dress him, etc. but I’m not so good at trying to listen to what he’s saying at the same time I’m trying to listen to a person on the phone.  I know from my training that the human mind can only think one thought at a time so when he’s asking me one thing and the person on the phone is asking something else, one of those thoughts has to be repeated.  It’s usually his but there is always an internal debate on which conversation should I consider first.

Then there’s the frequent, “can you come here for just a minute?” which is never just a minute.  Like last night I was working on a document and he needed me for “just a minute.”  It was 45 minutes later when I got back.  By then I had to totally re-read everything I had just written and get back into the topic.  Of course, 15 or 20 minutes later (sometimes sooner), he’s back with something he forgot he needs…and I start over again.  I do eventually get it done but I admit, I sometimes get pretty short with him.

Tonight I was working on something and he decided to nap. He got up two hours later and was a little miffed that I had let him sleep so long.  I told him I thought he must have needed the sleep since he didn’t wake up.  He countered with, “you just wanted me out of your hair for a while.”  He was right. It’s just so nice not to get interrupted.

I thought when my kids grew up, that interrupting thing would be over for the most part.  I realized recently that I’ll now have the type of life I had raising kids for a very long time to come (if we’re both lucky enough to live a long time.)  It’s not what I expected for our future but that’s okay.  There are still the naps that come fairly often and maybe one day soon he’ll be strong enough that he won’t need me as much.  Somehow, I expect I may miss being needed when that happens…at least some…but I think I could get used to it.

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