Hi everyone, this is my first post on here. I’ve been lurking since early 2021, when my mother (43) contracted HSV Encephalitis. She was in the hospital for over a month, and lost her ability to walk. She has since almost fully recovered, but developed drop-foot and is still bedridden. She’s learned to get in a wheelchair on her own and even went into public for the first time for dinner with me and my stepdad for mother’s day. I am so proud of her and so happy that she’s slowly reaching her normal again. But, I am 24. I’ve lived with her my entire life. I’m an only child and this has been the hardest year of both of our lives. My momma is my best friend. But I need to be on my own now, and in less than a month i’m moving across the country. I am so, so scared to leave her. From seeing her not know what year it was in the hospital..I am terrified. Her husband lives with her but it’s not a very happy situation. My mom is so used to being in control and getting things done. And seeing her bedridden just makes me so incredibly sad. I’ve been her caregiver for a year now..I feel so guilty for leaving her like that. I don’t really know where i’m going with this, I was just curious if anyone else has been in a similar position? I just want my mom to not worry about me and focus on walking again.
Thanks everyone for reading.
Written by
doodlebug98
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I’m so sorry this happened to your mother and that you’re in this position. I understand as well as an outsider can; I am actually in a similar but flipped situation. I got sick when I was 24 (now almost 26) and was still living in my parents’ house at the time. My mother called the second ambulance that likely saved my life, and she was there as much as possible in the hospital. I'm grateful to her, and I recognize how much trauma she has experienced, including and beyond my illness.
Out of hospital, I couldn't walk either and still struggle sometimes. I spent a lot of time in a wheelchair, using a walker, and now with trekking poles. I have since moved out of parents' house but still live with two of my siblings an hour away. We as a family have been through so much, as yours has as well.
I found that my relationship with my parents actually improved when I left. I need to take care of myself (with my siblings' help), and my parents need to do the same. It seems they are starting to realize that, by taking care of themselves and each other, they are taking care of me; I worry less when I know they are taking care of themselves and each other. At this point, my mother struggles to walk more than I do, but not from E. She has progressive idiopathic peripheral neuropathy, which makes her hands, feet, and legs numb. She walks like she's perpetually drunk. Granted she’s 20 years older than your mother, but just like yours, mine needs to worry about me less and focus on her walking more.
After moving and frankly becoming a hermit, I feel better and more stable. I no longer feel guilty for not keeping up with others or not visiting with family. I needed space and boundaries and whatever other buzzwords people our age like to throw around. I'm not saying family isn't important; in my life, family is second only to God. I'm just saying that each person needs to take care of oneself in order to better care for others.
One more thing: I live with one of my big brothers (27) and my little sister (24). I do not and will not allow them to sacrifice their social lives for me. We are already isolated so much because of me, and moving to a new city during COVID, etc. I want more than anything to see each of them graduate, enjoy their jobs sufficiently, have hobbies, date, marry, and have children... I would love to be an aunt! My brother says he can walk and chew gum at the same time, meaning he can care for me while also doing these other things. I don't know what the future holds (like your mother, I have to give up my conscientious and controlling ways in this recovery), but I do know that, when the chips are down, God and family will always be there. Right now, we in ES are also here for you. Feel free to keep posting!
Doodlebug98, that really does sound so tough. I’m not sure exactly what to say other than, as a parent myself – although of much younger children – I would want them to move on with their lives. Being a father means watching their lives develop fills me with satisfaction, I would hate to feel I was in any way holding them back. I can’t speak for your Mum of course but my guess would be she’s really rooting for you and your future too and wants to see you getting on with your life and enjoying it as much as you can. I don’t know if you’ll be moving very far away but hopefully you can still see your Mum often – and if not face to face then lots of video calls – and get her to promise to contact you if she ever wants to for any reason at all.
As I say, I can’t speak for you Mum, these are just my thoughts and hope it helps even if it is just one opinion from one post-encephalitis Dad. Wishing you all the very best.
There's a lot of info here to digest but your mum's progress sounds pretty good.
Leaving home is tricky, you could try mending a few bridges maybe. Friends come and go, there are sharks in the waters out there who are experts in appearing nice. They can leave you penniless and scarred.
My wife has made my recovery possible, at one point I told her that I was no longer the man she married and she could leave with my blessing - thankfully she stayed.
With her help and encouragement I recently had my first bus ride and shopping trip in at least three years. A big test for social skills, decision making (does my b"m look big in this? Will these speakers suit my Bluetooth?) and getting used to masks and swipe card purchases. Even had a haircut too.
I had to relearn to walk in hospital and when homed could only just walk to the end of the street. I can now manage a four-mile walk round Filey: steep slopes, narrow pavements and crowds.
Her recovery will take a couple of years at least, some things will return, others will be forgotten. There is support and rehab available in the UK if you can find an ally in the system who can bang on a few doors. Some medics seem content to sit at a desk fending off work.
Rehabilitating your mum could be good for both of you. In a way she is the child now and you the mother, it could be a laugh. You will learn a lot for sure, whether you stay or leave.
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