Hi all,
My dad got diagnosed with rr MS 5 years ago although he’s had symptoms for a really long time. Recently his fatigue has gotten a lot worse, and he gets these vertigo spells that completely knacker and paralyze him. I’ve been having a really hard time coping with it recently, as they live far from me and my brother so we don’t get to see him a lot. We saw him recently this past weekend and it really hit home how much his MS is starting to affect him. We’ve now had some conversations about power of attorney and what the future for him might look like and to be honest I’m just really scared. I feel like I’ve already lost so much of my bubbly and outgoing dad and I’m scared to lose more. I also don’t know how to talk to him about it because I don’t want to upset him. He’s still my dad and I still love him so much but I struggle to talk about it to my family and friends because I don’t want to upset them and a lot of my friends just don’t understand.
I know I should be really present and thankful that he’s still pretty well but I just can’t help but worry about the future. Do you have any suggestions or advice on how to support him and my mum from further away? Or any ways you make conversations about MS less upsetting or scary?
Hi Caitlin, this is my first post too. I was diagnosed with active SPMS three months ago but had symptoms including attacks of vertigo and l’hermittes etc for over 20 years but fobbed off by doctors until my legs gave up completely. High dose steroids for a week gave me back some mobility.
I think MS can probably be scarier for those around us than us sufferers. We’ve been living with many symptoms for years and gradually accomodating them into our lives because we have little choice. What you don’t say is if your dad is on DMT/dmd’s and if he is still RRMS. You also don’t say who you have discussed power of attorney for him with. I have to say if one of my children addressed the subject I would be really hacked off because although I’m not the person I was even six months ago, and in spite of relapses, it doesn’t mean I am unable to make decisions of any kind for myself now or for the foreseeable future. As I said, I suspect it is more of a worry for you and what you are seeking is some reassurance. So ask him. Straight talking is best I always find and instead of looking for all the things that are wrong with him, look for the things that haven’t changed. His humour maybe? Good Luck!
Hi Caitlin, there are some big questions here. I agree with Countryphile that some aspects of illness are tougher for family or friends to deal with. Being scared is valid, just don’t let it overwhelm you. Try to break things into smaller chunks and you will be able to deal with some and park others for later. As your dad is the expert on how he is feeling, you are one of the experts (close family) on how best to speak with him. There are probably no cast iron rights/wrongs and they might well alter on a daily basis. If I am concerned about an up coming conversation I jot down my thoughts. This gives me time to think through some consequences and make amendments.
Wishing you and your dad all the best.
Mick