Hi guys, I have aggressive RR MS c. 10 years and I’ve been on Tysabri 4 years and 4 years relapse free. My mom is very ill in hospital (78 years old) and I need to do a 4 hour round trip to see her. Over the last 2 weeks I’ve visited her 3 times and due to go again tomorrow. I’m an only child and my dad needs a lot of emotional support - physically he’s very good for his age. It’s got to the point that the travelling is starting to weaken me mobility wise (I also work FT) but dad has never recognised my MS and never asks how I am. I have no one I stay with whilst visiting (parents house has one usable bedroom) and I can’t afford B&B on top of fuel/train tickets. How can I make him understand that I love him and mum but need to reduce visiting?
the ms society does a series of publications.
i sent for the RRMS one to help me explain it to my family.
there used to be a tab for publications but i can’t find it!
maybe you could ask oliver or another one of the moderators.
the booklet had handy diagrams showing the myelin being attacked.
i really hope you can get hold of one and it helps your parents understand.
As well as following catwomancarole58’s excellent advice have you considered having a chat with the Sister on your Mum’s ward? She should understand and may agree to have a ‘casual’ talk to your Dad. For everyone’s benefit he needs to understand what his child is going through. Really, really difficult and I wish you all the very best.
I sorry that you and your family are having such a tough time.
Talking to elderly parents about these things can be awfully difficult. I think we tend to respond to others’ silent cues and you dad seems to have been sending you a clear message that he doesn’t want to talk about or acknowledge the seriousness of your health problems Who knows why he takes that approach. At the risk of sounding sexist and ageist also, it seems to me that a certain generation of father can love his family very deeply but not feel inclined to express emotions, either because he cannot see the point of it, seeing it as useless wallowing, or because he fears that, if he entered the dangerous territory of articulating his feelings and fears about his beloved child’s health, he might unleash an emotional fire-storm that he would struggle to control. Who knows? When he is feeling particular anxious and needy on account of his wife’s illness, that isn’t going to help either.
You will find a way through somehow. If there were obvious answers to help with this particular crisis, you would have thought of them already. Some situations are so tricky that the only thing to do is feel your way one step at a time and take it day to day. This sounds like one of those
Longer term, it sounds as though the time has come to address your mind to strengthening your parents’ support network local to where they are, having had a frank discussion with them about your situation and the fact that they are getting older and the need to plan ahead for the inevitable ills of old age. Rallying their friends and neighbours, for instance, making sure they’re getting any help they need from Adult Social Services (or privately if their resources allow). I have found it useful to set people up with a care agency who can meet them when they are well, but then be ready to step in at short notice when either or both of them falls ill. All these things are easier to do in fair weather than in foul, so much of it will have to wait while you fire-fight this particular crisis. But there will be other crises. A bit of planning ahead when the dust has settled could be a very good investment for your health and peace of mind as well as for theirs.
In the meantime, good luck with it all. It is a tough situation you are in, and I really feel for you.
Arrrgh, I desperately feel for you. My elderly mother will often belittle my symptoms, stating that my symptoms are similar to some of her friends (eg. who might feel a bit wobbly so have bought a frame to walk with etc)…however, she doesn’t acknowledge that they are 80 plus years old and not; 40 years old, with multiple symptoms, and working a full time job whilst juggling a young family etc. So I will give harder advice here… I think that old people (including your dad) are sometimes (often through no fault of their own) selfish, and you need to communicate exactly how much you are struggling. Communication is the key. State exactly what you are able to do, and if it is only travelling to the hospital once a month, he will have to understand. Ask the hospital to phone you direct in an emergency. You must look after your own health too, or you will be of no use to anyone. Kindest thoughts and strength Ali
Thank you so much all for your good advice. I have some good tips to begin to put into gentle practice today and moving forwards.