My mother got diagnosed with MS after giving birth to me, almost 26 years ago. Few years later she divorced and we moved back with my grandparents. She was able to receive a betaferon therapy which kept her in amazing health condition for 15-16 years, and then her health started declining…
For many years I have struggled with personal guilt, thinking that she is now struggling in life because of *me *. During my teenage years we fought and argued a lot, with me going through my hormonal phase and her being frustrated at me because her left leg was suddenly not cooperating that day. I did not understand it all then, but I do know now.
I got a once-in-a-lifetime opportunity to study abroad when I was 18, so I spent my most mother-longing years away from her. I was lucky enough to come home for summer and winter breaks, but every time I would visit I would see her health was going in a downwards spiral… so I spent nights crying because, as her only child, and a student, I was not able to help her physically nor financially. I still was the one trying to toughen her up. On the other side, my grandparents are overprotective and assist her whenever she has a slightest incovenience.
Today I’m an indepentend adult, still working abroad but much closer now, and my mother and my family are immensely proud of me and what I have achieved all alone. But my biggest concern and a trigger to start crying anytime is that now I have means to help my mother, but I see no way how? She is fully dependent on my grandparents, does not want to go out in public in wheelchair, but also cannot move anywhere on her own, has bladder incontinency… Physiotherapy did not help her at all, vitamins she takes are just for maintenance but MS keeps progressing… What brings her daily joy is her lovely nephew. I feel that through him she is trying to make ammends for the times when she yelled and was frustrated at me because of her illness.
I guess the point of this very long post of mine is to share my story with a group of people that fully understand what I’m talking about. I would appreciate you sharing if you or someone you know carries the same burden of wanting but not being able to help, or has found a way to help/be helped successfully, at such a late stage of MS. I would like to ease her daily life as well as help my grandparents.
If you have read this far, thank you and I wish you an abundance of health!
Hi there
Your sense of helplessness is palpable - and very common. Combined with a sense of guilt because you’re not there in person, you’re working yourself to a frazzle.
Fact is, there isn’t anything you can do and that’s where the helplessness comes in. Stop beating yourself up and live your life - I’m sure that’s what your Mum wants for you. Unless coming home isn’t an option in your line of work, just prioritise your visits a little higher, now the pandemic travel limitations have passed.
It’s a horrible disease and you’ve watched your Mum grapple with it your whole life - it’s not like it’s anything new. Presumably she went from RR- to SP-MS a few years ago as the disease is now significantly in its progressive phase.
It’s not like being ill, getting better and going back to normal. For people with progressive MS: a better analogy is like standing on the down-escalator. Stand still and you will just get worse, but make an effort, walk back up against the flow and you can hold station or slow the rate of going down somewhat. Throwing money at the situation won’t change the fundamentals - it has to come from within. Your Mum has to want to keep fighting it, even though she can’t beat it. It’s about acceptance. Accepting that if you could walk 50m last year, perhaps you will only manage 25m this year. The fight part can be her making the difference between it being, say, 40m or 20m instead. The best thing you can do is to give Mum the reasons to keep standing up to it: we get one life and must keep making the best of it, even when it’s a bit shit!
Graeme
Kpow, your time to help will come. Many of us (me included) who are more than a generation older than you will know from personal experience how difficult it can be to help a frail parent until that frail parent is good and ready to accept help (and that applies with bells on to grandparents). But when that time comes, and you’re needed, you’re REALLY needed. You will likely have more than enough opportunity to help your mother (and her parents) to be as secure and comfortable as she can be as the years go by and and old age and illness and frailty take their toll, as they inexorably will. Make the most of your unencumbered time, give those who love you plenty to celebrate, and resolve to take your fences when you reach them and not before. You’ll be there when they need you, I’m sure.