A Family of Caregivers

  • by Paul L.
  •   August 01, 2016

Paul L. is a paid Advocate for Teva Neuroscience, Inc.

My daughter is more than your average kid; she’s part of our family's RMS team.

Being a caregiver for someone with relapsing MS has its challenges. I help manage my wife's RMS symptoms and needs, and spend a little extra time being part of her caregiving team. Personally, I believe managing my wife’s RMS is a team sport and since our daughter has been about 5 years old, she has been a part of our team.

Because RMS is such a big part of our lives, including dealing with symptoms, walking in annual events, and raising money for the local chapters, we felt it was important to include our daughter early on. We knew we didn’t want to scare her about her mom’s health, but knew that she needed to be told, and that she would want to help.

My wife and I made sure we were telling our daughter the truth when she first started asking questions, but of course, we offered the simplest of details. Because my wife has great days, average days and sometimes, difficult days, we wanted to make sure our child knew why, as well as what RMS is and how we are going to manage it. We also wanted to make sure she knew we would address any issues, frustrations, anger or worries about her mom’s RMS.

As she has grown – she continues to ask questions and learn more about RMS, and the symptoms and effects of her mom’s RMS. She helps with daily activities and participates in volunteer efforts to raise local awareness and funds for advocacy organizations. When we participate in a walk or event, she is always there at the end or a rest stop to cheer us on. She has become a true advocate for people living with RMS, and like anything that drives us, it has given her an additional sense of purpose, confidence, pride and self-satisfaction.

Having another caregiver in our house has provided additional and appreciated support. Now that she’s older, she has truly helped us lighten the load of grocery shopping, errands around the house, and even cooking the occasional meal for us. I know her acts of kindness and generosity helps her in all of her relationships. She is part of our team and we know that together we are better.

Paul L.

RMS Caregiver

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11 Comment(s)
  • Vanessa | August 02, 2016
    I have RMS I wouldn't wish this illness on nobody. .I have a great caregivers which is my husband and my 12yrs old daughter. .It's really sad what you ho through on daily basic. And you daughter having to watch her mama go through such thing..It has been a rough road for us..Because I stay sick alot in and out of the hospital. .Every thing has worked right against me..
    • Teva's Lift MS Team | August 03, 2016
      It sounds like you’ve been through a lot, Vanessa. We’re glad you’ve reached out for support. Let us know how we and the community can help.
  • Ann Oswald | August 03, 2016
    Great article, Paul!!
  • Nicki | August 03, 2016
    So wonderful to hear your story! Very similar to my husband supporting every part of my MS days!
    • Teva's Lift MS Team | August 03, 2016
      That’s great to hear, Nicki! Having the support from family and friends can make all the difference.
  • Shirley fallon | August 13, 2016
    No one knows unless you have been diagnosed with MS how much u need support from family & friend. Alsso, learn about the disease. As to yourself u have to battle it.
    • Teva's Lift MS Team | August 25, 2016
      We hope that you find some support here, Shirley, as well as from Teva's Lift MS Facebook community. You can see stories from others like you at: https://www.facebook.com/LiftMS . We wish you the best.
  • Cheryl | August 30, 2016
    Your wife is lucky to have a support group. I hope she goes into remission and stays there til there is a cure. I have had RRMS since 1986. I was married for a few of the years, but divorced by time diagnosed. I never remarried because I didnt think it fair to put this on another. My daughter was approx. 10 when I delicately told her what drs said. She automattically paniced, started stressing,
    • Teva's Lift MS Team | August 31, 2016
      We understand living with MS adds extra challenges to life, Cheryl. We’re so glad you’re here and hope you find helpful support.
  • susan | November 04, 2016
    It is difficult to find a balance at times. On the one hand, your children become independent at an early age. For example, my daughter took responsibility for her laundry at age nine. On the other hand, you do not want to burden your child with worries that should not exist in childhood. Finding that balance is a constant juggling act.
    • Teva's Lift MS Team | November 07, 2016
      We are so glad you’ve chosen to share your experience with us, Susan. Please keep us posted on your progress, and best of luck!
  • Lisa  | November 04, 2016
    That is awesome because the bigger your support system is the better off you are! I have RRMS and it's nice to know you have help on your rough days! There are days I can't even get out of bed and it gives me comfort just knowing I have someone to come in and check on me and give me help if I need it! Praises to your daughter and I'm sure her mother feels Blessed!
    • Teva's Lift MS Team | November 07, 2016
      Thanks so much for sharing your story, Lisa.
  • Donna | November 04, 2016
    Congratulations on your positive attitudes and your teamwork. It takes all of that and more. Blessings to you all.
  • Sylvana Hernandez | November 04, 2016
    That's a wonderful gift you have. Unfortunately I felt like I was letting my kids down. They understand now as grown ups. I'm thankful that you started early with the teaching. Good Luck and Blessings to you and yours.
  • Roberta | November 07, 2017
    I am a person with RMS. I should consider myself very fortunate. I had a spouse who reassured me, after I was diagnosed 25 years ago, that he would love me the same way and help me with any activities that might slow me down. He was very emotionally supportive; and I was able to continue to working. I retired to take care of him in his last year of life. I am now taking care of just myself.
    • Teva's Lift MS Team | November 08, 2017
      Thank you for sharing your experience, Roberta! We hope you continue to lean on the community for support. Best wishes!
  • Lorraine | November 07, 2017
    You made my evening
    Loved your post
    • Teva's Lift MS Team | November 08, 2017
      Thanks for your kind words, Lorraine! Comments like yours fuel our efforts to build a helpful community.