Welcome, My MSAA Community, to our Ask Me Anything with Lara Krawchuk! We are excited to have Ms. Krawchuk joining us to answer YOUR questions.
Lara Krawchuk, MSW, LCSW, MPH, is a licensed clinical social worker, therapist, and wellness educator. She has a passion for supporting families facing chronic illness and loves to help individuals and families learn effective communication strategies for getting the help they need.
For the next hour, please feel free to ask Ms. Krawchuk your questions about care partner needs as a reply to this post. Don’t forget to keep refreshing the page to see the latest questions and responses.
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I have 2 questions from Fancy1959 and her family. The 1st is, her husband would like to know, What kind of results are they seeing in Ocrevus patients that have been on it for 3-4 yrs?
And her son would like to know, What is the most dangerous thing MS can do to an MS patient?
I am so sorry, but my focus is on the emotional impact of care partnering. I would encourage both of those individuals to speak to their neurologist for those.
MSAA recently conducted a poll on our community asking members what topic they would most like to discuss in this AMA and the top choice was "Strategies for Self-Care." Can you offer any suggestions on this topic?
You are not alone. Asking for help is really hard! Try to remember that many people do want to help, but in the absence of specific requests they may not engage fully. Try to remind yourself that you mater, you deserve support, and that asking for help is a sign of real strength!
Good evening. I'm a reporter for BioNews Services. I'd like to know what are some strategies the care partner can use to minimize the impact MS may have on the couple's children.
Yes. That can be really helpful. Some children want to help and others are reluctant to. What kind of tasks given should reflect their age and maturity level as well as their emotional readiness to engage in specific kinds of care.
Tasks might include making food, reading to the person, helping them with mobility, cleaning related tasks, creating playlists for the person with MS, and anything else you can think of that feels safe and age appropriate. Be creative, ask the child for ideas. They often feel very proud when they help. Be sure they get breaks too.
There are many kinds of support ranging from professional support, like therapists and medical social workers to informal supports like friends and family members.
Clergy can also be a great sounding board and can help answer faith related questions.
Support groups-in person and online can also be really helpful.
Check out:
MSAA
National Alliance for Caregiving
Rosalyn Carter Institute for Caregiving.
Google caregiving and lots of great resources pop-up....
Yep-humans tend to want to know what comes next, but in the world of illness that kind of clarity is rare. Gently tell your friend that answers usually can't be found in advance, but that you will keep her current on important things that happen. A CaringBridge.org page can be really helpful to keep large groups of people updated on what's going on in your family life and also a great way to ask for help from your community.
what's the best way to deal with feelings of guilt the care partner may feel because they think they're not doing enough, or they get cranky or frustrated when they try to help their partner?
It is very normal for care partners to get crabby, make mistakes, not feel like they are doing enough, etc. Guilt can be a byproduct of doing all you can do and having it feel like not enough. It is important to have a safe and honest confidant who can listen when you are feeling overwhelmed or guilty. They can help you figure out if you owe an actual apology or if you might be being hard on yourself.
Any emotion that has not outlet can get pretty toxic and come out all over the place so if you are having big emotions it is important to get it out....
Everyone needs to take breaks. Short and longer breaks are important. Learn what recharges your batteries. Every day find ways grab some alone time or some quiet time to do something just for you.
Ask for help so you can take this time.
Care partners VERY often fail themselves while they take excellent care of their loved one. Effective care partnering over the long haul takes a strong self-care plan and taking good care of yourself too.
It is important to talk about sexual frustration directly, gently and kindly.
It may be important to speak to the Neurologist to see if anything can be dome to improve a sexual connection.
Also it is important to note that there are many ways to be intimate without being sexual.
Touch is important.
Talk about what is desired and explore new ways to connect as needed. Do not expect quick fixes. This is an enormously complex issue. A couples counselor can be very helpful in facilitating these conversations...
care partner fatigue is a normal and expectable thing when an illness is chronic. It does not mean the care partner is bad or failing. It may mean they need a break or are struggling physically or emotionally. It may mean there is not enough help from outside coming in.
Signs of fatigue may include:
A) Snapping at the person with MS or at others living in the home
B) Physical exhaustion, frequent illness or pain
C) Sleeplessness or sleeping a lot but never feeling rested
D) Emotional volatility
E) Eating too much or not enough
F) Deep sadness
There are other signs too so if you are worried about yourself ask for some advice
As someone living with MS, I find it difficult to know how much to tell others. On one hand, I know I need my closest circle to be my care partners (especially as I’m single and have no children); on the other hand, I don’t like that the only thing I have to talk about is my situation. Where is the right balance?
Yes this can be a tricky balance indeed. The right balance really depends on who you are talking to. Some friends can really listen to your struggle for long periods of time and others can't. Some friends are better supporting you in concrete ways, others have excellent ears for listening. Match the amount you share and how often you share to what you know about your friends. Also overtly invite them to let you know if they feel you need to share less. Being direct and honest is always a good policy. I hope this helps....
Excellent suggestion, thank you! I already know which one friend always wants to hear more but I do need to figure out the others. Maybe there are others who would be happy to hear more but I just keep things to myself—and become isolated.
So true. We do not want you to be isolated. That is so painful. Try to assess which friends would be open to hearing or doing a little more and keep building your circle of support. It takes a large village to get all the support you need. It may take time to find out who can do what, but this is worthy exploration for sure!
I have MS and Im very independent, but my husband is my rock when I need a shoulder to rest on or cry on. I feel bad because of his job and our money situation. He lost his job 1 year ago, started driving for Uber/Lyft full time and loves it and he makes really good money. Im on disability and i feel guilty for not being able to work as i used to for 25 years - working 75-80 a week at 2 jobs and truly loving working hard. Now i take care of the bills and because i know when the bills, especially the big ones, need paid i feel like im always on his back about going out to drive. Money comes in so differently than a paycheck and it can vary greatly from week to week. I probably know the answer, just tell him how i feel, but i worry that my stress level will effect his stress level. He is so good to me and with me that i dont want him to resent me for not working. Who would have thought after 30 years of marriage we would be dealing with all this crap.
Yes MS is a lot to handle in a marriage, but it sounds like you two are deeply committed and caring towards one another. It is ok to voice how you feel to him. Maybe state your truth and also your gratitude for all he does for you. Keep it short. Sometimes when there are no easy answers we speak too long or too often and it gets exhausting. Remember your worth and value does not depend on the job you hold. Sounds like your husband loves you very much and you him!
Wow, do you know me personally - haha. Everything you just said truly fits me/us to a tee! Yes, we have a great relationship! I know I talk to much and he begins to zone out! As for my worth and value not depending on the job(s) that I have held - im a very, very slow learner - Ive been in therapy for 4 years this month and that is one of those things that i can not get past. It really is tough to figure out when I was in management positions at my jobs and now i cant manage my health, the bills or my guilt. I make it much harder on myself!!! Thank You!
I love this question. Care partners and loved ones living with MS are truly partners. It is a great idea to help care partners know they deserve to take breaks. Say this with love. Remind them first of how much you appreciate their love and care, tell them that their well-being matters to you too, gently suggest they spend some time doing something for themselves so that they get a rest and some alone time.
Sometimes making a pre-plan for this time can be easier then trying to have a sensitive conversation on the fly.
These are conversations that matter so have them....
Sorry I do not have this information. MS can be tough on a relationship so talking about the challenges openly and finding new, effective ways to connect can be really important. So too can taking regular "me time" or "alone time". This can be good for both partners and regularly recharging tired batteries is really important!
Wow. That is a lot on one plate and not unusual. Self care strategies and broadening the circle of supporters is going to be essential in this situation. Also setting good boundaries. Here is what I can do and here is what I can't. Very honest, direct and regular communication is going to be critical here.
If hiring help is an option it can be a really good idea!
On behalf of everyone here at MSAA, we want to thank Lara Krawchuk for her time and expertise, as well as our My MSAA Community members who have participated and asked questions! We would also like to thank EMD Serono for supporting this AMA through an educational grant. For more information about Care Partner Needs, please check out our archived webinar “The Partnership of Care” at mymsaa.org/videos/the-partn... and MSAA’s podcast “Spotlighting Care Partner Needs” at mymsaa.org/ms-information/m...
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