Daily News for Neuros, Nurses & Savvy MSers: 208,152 Viewers, 8,368 Stories & Studies
Click Here For My Videos, Advice, Tips, Studies and Trials.
Timothy L. Vollmer, MD
Department of Neurology
University of Colorado Health Sciences Center Professor

Co-Director of the RMMSC at Anschutz Medical Center

Medical Director-Rocky Mountain MS Center
Click here to read my columns
Brian R. Apatoff, MD, PhD
Multiple Sclerosis Institute
Center for Neurological Disorders

Associate Professor Neurology and Neuroscience,

Weill Medical College of Cornell University

Clinical Attending in Neurology,
New York-Presbyterian Hospital
You'll get FREE Breaking News Alerts on new MS treatments as they are approved

HERE'S A FEW OF OUR 6000+ Facebook & MySpace FRIENDS
Timothy L. Vollmer M.D.
Department of Neurology
University of Colorado Health Sciences Center
Co-Director of the RMMSC at Anschutz Medical Center
Medical Director-Rocky Mountain MS Center

Click to view 1280 MS Walk photos!

"MS Can Not
Rob You of Joy"
"I'm an Mom has MS and we have a message for everyone."
- Jennifer Hartmark-Hill MD
Beverly Dean

"I've had MS for 2 years...this is the most important advice you'll ever hear."
"This is how I give myself a painless injection."
Heather Johnson

"A helpful tip for newly diagnosed MS patients."
"Important advice on choosing MS medication "
Joyce Moore

This page is powered by Blogger. Isn't yours?



Caregiver Perspective: My World Is Very Structured

Donna Steigleder is a human resources professional by trade, nurse by training and caregiver for her husband, Lynn, who was diagnosed with MS in 2006. Donna now balances her time between her full-time job and caring for Lynn 24/7.  She shares her story to describe the challenges and triumphs associated with the life of a caregiver.

My world is very structured. I have a routine for almost everything so that I save time and don’t forget things. When my routine is in place and flowing, life is hard but it’s manageable. HOWEVER, let a little crisis get thrown in and it can tip me over the edge.

I still work a full time job and am a Director of a department. I am fortunate that my supervisor allows me to work from home most of the time and have flexible hours. She knows I’ll get the work done. I’m phenomenal at multitasking and I usually work some for my employer every day to make sure I don’t get behind.

Working from home is essential for me. My supervisor knows that if I had to come into the office every day that I would have to resign. I live an hour away from my work site and it takes me four hours to take care of Lynn’s needs before I can arrive at work for a meeting. If I had to come in every day at 8:00 a.m., I would be getting up at 4:00 a.m. I would leave my house at 7:00 a.m. I use family and friends currently to provide for my coverage when I am gone; not too many of them want to come to my house at 7.  Therefore, Lynn has to be alone for an hour or more when I have to be somewhere at 8. That’s why I usually start my work day at 11 a.m. and work until 8 or 9 p.m. each day.

I just found out that my second in command; my on-site eyes and the clone of my younger self; is resigning. I’m very happy for her because she has a wonderful opportunity but I’m devastated. The minute I got off the phone with her I started to cry. True, some of it is sadness at the loss of a good friend because, face it, once someone leaves your employment, you rarely keep in touch. We had much in common and it’s good to be able to have that connection with someone. However, my real pain is in the disruption to my structure.

Since I rely on her for most of our sensitive case management, that means I’ll have to take that role back at least for a while. She and I are the main ones who do training on our job functions; so I’ll be taking over most of that. Those folks who used to come to me for advise; now go to her but I expect they will be coming back to me until they get used to one of my other staff. All my team are excellent but people get used to one person and it takes a little while to transition customers into trusting someone else. What this all means is that I’m going to have to be more focused on time sensitive issues and coming onsite more often to do face to face interactions. That’s a problem.

I can’t just agree to a meeting in two hours. Finding someone to stay with Lynn is a challenge. If I am gone, he needs an indwelling catheter which causes irritation if he has it in too long due to his constant use of a bicycle type peddler that keeps his legs from being so stiff. If he gets irritated “down there” then he’s more prone to infection. If he gets an infection, his body has a difficult time fighting it off. He gets weaker all over and it takes a very long time for him to recover. Once he was in the ICU for several weeks due to complications that grew out of a simple urinary tract infection.

I already get very little sleep just keeping up with my job, his care, our house, and my own needs like a meal or a shower periodically. I don’t go “out” except maybe 2-3 times a year and it’s a major planning event to do that. If I have to go into work more often, I’ll use up the time my “sitters” can help quicker and then my opportunity to go out will completely go away.

However, as I panic, I must remind myself that “this too shall pass.” I have had three people leave my department in the past two years; all for better opportunities. (Did I say my team was awesome? They are but the draw-back is that everyone wants to steal them!) I know what lies ahead. I know for 3-6 months life will be very stressful. I can adapt to that…if nothing else happens.

But…when have I ever gone 3-6 months without facing a crisis? Small or large, change is disruptive. It causes chaos, panic, fear, anxiety, and they are all exhausting. However, this I know. I will get through it. God is always by my side giving me the strength I need when I need it. He will see me through this and give me the resources I need and He will not fail me; I will survive.

I’m taking a deep cleansing breath now…the time for my pity party is gone.

By Donna Steigleder—September 29, 2015

Story Source: The above story is based on materials provided by MULTIPLESCLEROSIS.NET
Note: Materials may be edited for content and length 

Go to Newer News Go to Older News