My name is Erin and my mom has had MS since I was born. I'm 30 years old; she's had it for 30 years. I am honestly at a point right now that I don't know what to do anymore to help her. She is walking with a walker but can only walk a little distance before she is either dragging her feet or becoming tired. She has pretty severe tremors that have taken her hand writing away, and she can't even feed herself. I moved her into assisted living in May of 2016. She has been there over a year now. I'm happy that there is always someone there if she falls or needs help. What I have noticed though for the past several months is that she has a panic attack almost everyday at the same time. She is on new meds with a psychiatrist, but she seems to be getting so much worse. She will call me everyday panicking and then needs help calming down. The last 2 days she has said to me that she wants to give up. (Her sister, my aunt, died from having MS and gave up as well). I have told her that she is going to fight through this and that I am always there for her....meanwhile, it is absolutely tearing me apart inside with how much she is suffering. Has anyone out there ever know of anyone or who have experienced these types of psychiatric issues? I am in desperate need of any advise or help. Many thanks and love to all of you out there. ✌🏽💜
This is Steve with the National MS Society.
I'm so sorry to hear that your mother (and you) are going through so much!
I'm glad to hear she is working with a psychiatrist, but it sounds like you both are in need of additional support. We are able to help you connect with other support resources such as peer support and professional counseling resources. Here is a link to info about some of the peer support resources so that you mother may have another place to reach out to when she is feeling very anxious.
If referrals to in-person support groups or referrals to professional counselors would be something either of you would be interested in, I'd encourage you to contact our Information Center at 1-800-344-4867 option #1. One of our MS Navigators would be happy to assist in anyway possible.
aww thanks so much Steve!! I will definitely check it out. :)
I am so sorry that you and your mother are going through this. When I was first diagnosed and for a few years after I had panic attacks often. I think, for me, the panic attacks had to do more with learning how to deal with MS at a younger age and not really the MS itself.
This sounds like you both need support. I cannot imagine what it is like to have MS for 30 years (I was diagnosed at 20 and am about to turn 35), or to see a parent have to suffer from the effects of MS.
For you, I would suggest caregiver community support. There are some great resources through the MS Society and many hospitals have caregiver support groups (at least where I live) that aren't related to one specific condition. I understand your mother is in an assissted living community, but that does not mean you are not being a caregiver. It is obvious you love and care very much about your mother and are experiencing many of the stressors that other caregivers go through.
For your mom, that one is more tricky for me to try and offer advice for. I can completely understand wanting to give up and when I get to that spot in my life, I don't want to hear anyone tell me I don't have that right.
However, I have a very elderly grandmother who (while not going through any specific condition) has become very depressed from seeing her brothers, sisters, friends, and husband all pass away before her. Her depression from just living longer than everyone she knew in her age cohort has made her want to give up. Obviously, her children and her grandchildren don't want her to, we love her dearly. So what we ended up doing, instead of trying talk her into a better place was to find ways to involve her in 'normal' life. The family visits her, involves her in activities that she can handle (even if it is difficult to move her around and she can't handle many hours out and about). Treating her like she wasn't a burden helped out immensely. Also maybe see if there is psychiatric care available to your mom or some that is available to come to where she lives. I know every situation is different, and I don't know how much of this advice is pertinent to you, but that is what worked for us.
I know this isn't probably what you want to hear, but getting help for yourself may be the most you can do at this point. I am not suggesting that you give up at all in finding help for your mother, not in the least, but there is a limit to what people can do (and that limit is different for every human being). However you can be there to help your mother, you need to be sure you are taken care of as well in order to provide that help.
I am very sorry you are going through this. I cannot imagine what it would be like to watch my mother suffer so much. MS can be very cruel in how it affects not only those who directly suffer from it, but those who love us as well. Make sure you do what you can to find help for yourself and that might lead to help you can give your mother. I wish you nothing but the best wishes and the best for your ailing mother.
Michael that was perfect advice!
Thank you SO MUCH for taking the time to read my post as well as responding in the way you did. I appreciate it so much :) I have thought about talking with someone such as a counselor to help with dealing with this. It is very hard seeing my mom suffer through this and it breaks my heart everyday hearing her frustration. Thank you for the advice and best of luck to you as well.
It sounds as if your mother could benefit from a skilled care environment. If she is unable to use her hands due to tremors, she needs more help than she can get in assisted living.