https:// Home ». NMSS

NMSS

See Me Through His Eyes

I’m ashamed of how much I complain to Lynn about the things he asks me to do.  If he calls me to cath him and it’s only been 40 minutes I’ll say something like, “you’ve got to be kidding!  You couldn’t possibly need to pee again this soon.”  Today I was gripping because he now eats four small meals a day rather than three times a day. That’s one extra 30-minute period for me to prepare his meal and feed him.  When he wanted to exercise, I sigh and say, “Guess I won’t be making that phone call I need to return.”  I say things all the time to make him feel guilty for asking for my help!  I don’t see how he puts up with me or why he still calls me his sweetie.
Thinking about how I must make him feel, I envision what his world must be like with me in it.  I want to share that with you and hopefully remember it myself the next time I start whining and complaining.
————————–(this is how I imagine Lynn thinking to himself)———————–
I wish I could go back to sleep. It’s 7:30 a.m.  Is Donna getting up at 8 today or 9?  I really need to pee but I had her up twice last night and I know she needs to get some sleep.  Maybe I can wait…
Did I hear her? “Donna, are you awake?  I hate to wake you up but I really need to go.”
Donna: “I’m awake now.  Can’t you hold off a little while longer?  I’ve only been able to get five hours tonight.”
Lynn: “I’m sorry but I really do need to go. I’m so full, I don’t think I can hold it much longer.” I hope this is not a false alarm.  I really don’t want her to be miserable all day and I hate to interrupt her sleep like this but I feel about to bust. 
Donna: “Okay,” (heavy sign) “I’ll get up.”

(an hour later after he has done his vocal exercises)

Lynn:  “Do you have time to help me exercise?”

Donna: “What do you want to do?  My hands are really hurting this morning and so is my back.”

Lynn:  “Can you help me with the Tram?”

Donna:  “I don’t know.  I need to check emails and get things ready for us to go to the chiropractor today.  I really need to get back to xxxx.  Maybe if you don’t ask me to do anything else afterwards, I can fit it in.”

Lynn:  “Maybe I should wait and do it tomorrow.”

Donna: “No, you want to do it today so we’ll do it today. (heavy sigh)  Just let me figure out how to fit it in.”

Lynn:  I don’t want to bother her but it’s been a week since I was up on the Tram and if I let it go much longer, I’ll stall my progress. I’ll try to do it quickly so I don’t bother her any longer than necessary.  “Thanks.  I really appreciate it and I’ll try to keep it quick.”

As I rush out to get breakfast, Lynn thinks, I hate being such a burden.  I know she’s doing the best she can and she doesn’t have enough time like it is.  I know I shouldn’t add to her work but if I don’t exercise, I can’t get my strength back and I’ll never be able to help her around here.  I want to be her husband again.  I want to take care of her and do the yard work.  I want to fix the front porch rail and get the windshield wipers changed for her on the truck. I want to take her places with me driving so she can sleep in the car or read like she used to do. I want to earn a real living; not just get a few dollars from disability.  I want to take the load off her shoulders.  I’m her husband.  I want her to see me that way again and not have her think of me as one of her children to care for or worse yet, a job she has to do.  I’m afraid she will grow to resent me and my demands on her time, but I get so cold if I don’t drink hot tea and then I have to pee so often when I do. 

“Donna, can I have some tea?”

D___ I dropped the remote. I hate this show.  I’ll type instead.  Let me send another query letter out for an agent. …I’ve written that paragraph four times now and I’ve lost it each time.  My computer is acting up. Maybe she can help me  figure out the solution.  I’ll ask her when she comes back… but I know she doesn’t have time.  Maybe I can get her to help for just a minute though.  Maybe she won’t be as bothered with me if I get her to do everything while she’s here and not have to call her back anymore…

—————————————————————————————————–

In my mind, I imagine those types of thoughts go through his head every day.  I know he hates to be a burden. I know he doesn’t feel like a man and that he’s eager to get his book to sell, not for the glory, but so he can bring money into our home to help relieve some of my struggles. Lynn is very thankful for what I do for him.  He gives me a lot of praise and signs of appreciation.  I’m very fortunate, he is so thoughtful and doesn’t make my caregiving experience so much harder than it already is. I’m a lucky woman; so why am I so critical and complain so much?

Lord, forgive me. Help me to see through his eyes, to feel through his skin, to hear with his ears, to feel his pain and frustration.  Help me to see the man I married and not a patient demanding my attention.  Help me to show compassion and love, respect and gratitude, encouragement and hope, and most of all faith in You that you will see us both through the good and the bad times.

Amen

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 me a request to accept you as a contact, which of course I will. This has to be done in advance of the group meeting so I can add you to the conference call.
  • The day of the conference call, I’ll have already created a “group” for the session and I’ll send you a call when we’re ready to start.  You just answer the call and we get started.  Hopefully, it’s really that simple; however, I expect we may have a few glitches to work out initially so have patience.

Let’s set the date for our first support group meeting as June 16 and we’ll meet at 2 p.m. Eastern Standard Time.  That means you’ll need to convert the time for whatever time zone you are in.  I’m looking forward to meeting you all and having a real talk.

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 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 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), it allows you to meet the people on the other end of the conversation.  Skype also offers an option for video conferencing which enables the subscriber to have multiple pictures of callers up at the same time.  There is a fee for this but it’s only $10/month if someone wanted that option.  See where I’m going with this?
If enough people were interested, we could have a virtual support group of caregivers.  From the location of our own home, we could reach out from across the country or even overseas to meet each other and share a “real time” conversation.  By getting together on-line in this manner we could attend a support group while still caring for our family members.  Many laptops now have webcam capabilities built in but I’ve looked into buying a webcam and you can get some good ones for less than $50.  Skype has some listed as five stars that are around $25. I’m very technology illiterate so I may be missing something that would not make this possible, but I don’t see why not? 
If you’re interested, I was thinking maybe once a month, on a Saturday afternoon, we could designate an hour to talk about whatever is going on that month.  I’m not a therapist or a counselor so this would not be a therapy session; just a group of caregivers who share a common challenge who get together to encourage and support one another.   I don’t know if it would work but I think God put this on my mind as an option to reach out to support people in a more personal way.  I would still do my blog but this would be a separate project.
So, what do you think?  If you’re interested, let me know.  If there’s enough interest, I’ll buy the subscription to Skype for group video conferencing.  I think you could call in and just view me if you only want the free subscription or if you also subscribed to video conferencing, you could see everyone else who calls in. I’m not sure about that though but it makes sense that you could.  So give it some thought and we’ll see if there’s any interest.  I’ll get back to you in about a month to let you know if there’s enough interest and when the first meeting would be.
Be “seeing” you soon?

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 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.

MS Connection Site correction

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

Connect the Dots

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.

Please participate in this survey related to Caregiver Needs

I received this email request from the Southeastern Institute of Research asking me to post a link to a survey they are conducting along with the National MS Society  and the National Alliance for Caregiving related to the needs of caregivers.  The study is investigating issues related to caring for someone with MS and the needs of family and friend caregivers.  
The survey takes approximately 20 minutes to complete and is completely anonymous and confidential. No one will ever ask for your name or contact information.  Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the MS Society so that they can learn how to better meet the needs of those caring for people with MS.
 I hope you will consider participating.  The survey closed on  Friday, October 21. For the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.
 Here is the link for you to copy and paste or you can click on it at the right. 
www.sirresearch.com/MScaregiver
 I’ve taken the survey and it asks very relevant questions.  I encourage each of you to take the time to participate.