Really need advice on how to care for my daughter . She is 25 and living at home. She has RRMS and has now isolated herself. I can cope with the physical but not the emotional. I know she takes her frustration and fears out on me but I am at a loss as to how to react. I try and understand and am there as much as possible but whatever I do seems to be wrong. She is supposed to be speaking with a counsellor but keeps on cancelling ! Any suggestions please?
Hi Susanna! I am so sorry you and your daughter are dealing with the ramifications of RRMS. Since she is an adult, you and I both know that forcing her to do anything is virtually impossible. It is safe for you, as her primary caregiver, to establish come boundaries. She can be mad, but she cannot always take it out on you. Only you can decide what crosses the line for you. So, don’t be afraid to set some boundaries with your daughter. We have caregivers on this site, like Donna Steigleder. She writes extensively about her experiences being a caregiver for her husband. You might appreciate her latest article — https://multiplesclerosis.net/caregiver/confessions-of-a-stressed-out-caregiver/. Check her other articles out — I bet you will find them quite relatable. Might I also suggest that you look into some support for yourself? The Caregiver Action Network (CAN) offers lots of support for caregivers — http://www.caregiveraction.org/. For your daughter, there are support resources available that don’t even involve leaving the house. The Multiple Sclerosis Society offers peer-to-peer support. Peer-to-peer support is kind of like a MS-knowledgeable penpal for the digital age! If she is not opening to going to local support groups or counseling right now, this might be a less daunting way to talk about her feelings — http://www.nationalmssociety.org/Resources-Support/Find-Support/Connect-with-Peers-One-on-One. You can also see if there is a local chapter near you — http://www.nationalmssociety.org/Chapters. The Multiple Sclerosis Society offers a variety of support options, depending on location. I hope this information helps! I hope you are able to take time to care for yourself, Susanna. Don’t hesitate to reach out again, should you have anymore questions or concerns. Thanks, Erin, MultipleSclerosis.net Team Member.
I myself have RRMS and have had 3 relapses on the space of 7 months each one leaving me more and more
disability, I am completely housebound now also I am
a single parent of 3 amazing children;Kaine 19,
Renée 13 and Nathaniel 11. Ive been housebound now
for 3 months which is driving me mad but the reason I am writing this to u is that I also jabe isolated myself but also people including family have just stopped coming to see me as I found out recently becaise they are scared, I dont get that but hey!!
My eldest son doesnt live at home anymore but if im bad he will come and stay or if I have to go onto hospital then he takes care of his siblings
MS is a very lonely, isolating disease, I dont think
its.something we mean to do but u feel like nobody understands u so instead of hearing certain things from people but all I can say is keep reaching out
and showing her ur there for her hun amd finally something will click with her and she will welcomes u with open arms! I’ve just had to reach out to family as they all said they were all scared of what they will find or saying the wrong thing, but to be
honest I think it was a cop out but hey!!!
I feel for u Susanna its so hard being on the oitsixe outside looking in and we as MS suffers sometimes do not realise that as all of a sudden we feel like our lives are over (which is utter nonese)
I just want to let u know that it is so normal to
isolate urself when u have a chronic invisible illness, the feeling of beong misunderstood etc.
I hope this helped Susanna and feel free to cpntact me again and I apologise if some of my words are wrong hun im going through a relapse at the moment and my fatigue and brain fog is awful.
Take care and I hope things get betting for u and ur
Daughter, I really do. Kindest regards Louise York xxxx
Thank you Erin and Lulu for your helpful advice. I am finding it increasingly hard dealing with things as I have discovered that she is being very devious ( I hate using the word “lying”) So much so that I can’t believe everything she tells me. This is very upsetting as one day something will happen and I may not take any notice
I do understand she is scared and feel very guilty telling you all this but she is not a child and I cannot seem to get through to her. I have not had a break for years and things are getting worse emotionally not physically.
We live in the north of U K and there is very little support available.. Anything through the NHS takes months such as counselling etc so I have been seeing a counsellor privately which has been helpful.
I don’t want to be confrontational as this creates more stress and anxiety which in turn seems to stir up all her symptoms!
I know I should look after myself as I will be no use to anyone and all this is putting a strain on my marriage but at the moment I cannot see “the wood for the trees”.
I must admit that at this point I wish that she would move back into her own flat and start living again but I can’t see that happening as she seems to have become her illness and that is all she talks about . It is almost as though she doesn’t want to get better. I know that this is with her for life but I think she is too scared to move forward. Any advice ?
I am sorry, Susanna. This sounds like a tough situation for everyone. Only you, as a parent, can decide what will work best for your child. Would a tough love approach work in the long run? Or not? You can’t make her take responsibility for herself, but you can quit picking up the slack for her, if that makes sense. I mean, of course you don’t want her to suffer, but if she wants a meal, she can make it herself. If she needs to schedule an appointment, she can do it herself. I am not suggesting throwing her out, but just like when our kids are maturing into adulthood, we have them take baby steps to be more independent. And just like when they’re young, it can be nerve-wracking for us AND them. But we learn. And it may not all go smoothly, but you’ve already done this as a Mom. And you can do it again. No one knows your daughter quite like you do. And you probably already know some small things you can do to help her become more independent. I saw this quote on a friend’s Facebook page and I thought it summed up living so well — “I am not what happened to me, I am what I choose to become” (Carl Jung). So, your daughter has been dealt a rough blow with her diagnosis. There’s no denying that. But, really, what does she want the rest of her life to look like? You can show her our online community and the many people who lead full, active lives despite having MS. That doesn’t mean their lives are perfect and there are no bumps in the road, but they persevere because they have found something worth living for. So, what is worth it for your daughter? If she can find that, she can start living again. Thank you for sharing here. You are welcome to come here anytime. We’re glad to have you. Best of luck! Best, Erin, MultipleSclerosis.net Team Member.
Thanks Erin. You are quite right. I believe she is so overwhelmed with what is happened to her life that it is a lot easier to stay put. I can entirely understand what she is doing but I would love to be able to instil some hope and motivation for her to be able to fight and move forward.
Maybe I am expecting too much and maybe I am over caring which is not a good thing either as I have made her too reliant on me ! so the guilt sets in – I am damned if I do and I am damned if I dont!
I feel at the moment I am being dragged down with her and I desperately want to remain strong. Also I have other children and a husband that need some of my time so a double helping of guilt creeps in as I know I am neglecting them. I am sure there is light at the end of the tunnel but at the moment it looks like the oncoming train.
I wish there was a magic formula for carers to keep up the mental strength, but it certainly helps to come here and vent.