Hello all and update (really long)

    • Anonymous
      March 18, 2011 at 5:18 pm

      Hello. It’s been a while. Recap: Mom came down with GBS, end of April 2010. She was paralyzed neck-down for a week, but able to move her arm/hands at the end of the week after IVIG treatment, and was finally able to wiggle her toes end of May. June she moved to what was like a nursing home while she was weaned off of the ventilator. July she moved back to the original hospital for inhouse rehab – 2 hours each of PT and OT every day. August she moved back home because the insurance company believed she has plateaued. She was sleepy all day, spent most of the day in bed, very weak, had no trunk strength, little arm movement, barely any leg movement, low blood pressure whenever exercising. Then, I got the GBS newsletter and found that she had the smallest chance of walking in 6 months (she’s 62, had diarrhea on onset, and had to be intubated), so, worst case scenario.

      Although in August I tried my hardest – called up suggested doctors (who suggested following proper procedures with insurance by filing paperwork), my neurologist (who basically said he couldn’t do anything because the insurance company is trying to save money), I realized I couldn’t convince insurance company to let mom stay, so I accepted she had to come home and made preparations.

      It’s been an exhausting year. I am her primary caretaker. I can transfer her, and I am the only one working her out at home because insurance company only covers hospital stuff, not home/long-term care stuff. My dad does not work her out, so I’m really tired and exhausted and don’t have much time for myself. So, I insisted on getting home OT visits and having him pay for them.

      What I’ve learned is, unless she can move it, there’s no point for therapy. Since she couldn’t move her legs consistently until December (and she couldn’t weight-bear until mid-February, I’ll explain later), we had several PT evaluations, but no full-on PT visits. Since she can move her arms, OT was worth it at 3x/week. We saved money that way. However, that meant more work for me.

      During this whole time, NO ONE ELSE would help me work out mom! Not my sister – she had such little patience she stormed out (she pays for everything at least). Not my friends – I understand how awkward that is. But I can’t help think that if we had a few friends visit just once a month and not just encourage her to exercise (because she’ll just sit there and nod) but MAKE her workout, how much pain and headache that would save me. In my mom’s case, everything needed to be worked out (including lungs, wrists, fingers, teeny tiny things people usually take for granted).

      November I broke my mom’s femur. We were doing stretching exercises, and I did not realize her osteoporosis was that bad. So that was a horrible experience. The only good thing was that her nerve inside her leg was not fully healed, so she didn’t feel anything! We had to wait until February for the doctor to OK her to weight-bear on that leg. Until then, I worked her out everyday, twice a day, one hour each time. Despite the fact that she couldn’t weight-bear (much less practice standing), I built up her trunk, arm strength, and legs. The OT helped a lot with her shoulder range of motion.

      After her broken femur, I thought of low impact ways to work out her legs and used the pedal machine. Her legs were thin as matchsticks until I started making her pedal – I put her feet through the stirrups and pedaled for her because she lacked the strength to do it herself. She said her legs were really numb and sore, and then I realized “duh, you haven’t moved your legs like this since April!” Now she can sometimes pedal herself. We do this twice a week.

      She’s come a long way. In December, she could not sit up without leaning against anything and raise her hands, she could not kick her left leg 10 times in a row, she slept all day except for meals and exercises (back then I actually did 3 or 4 1-hour sessions each day).

      Now, she’s awake for most of the day, sitting up watching TV, sometimes she can’t even sleep at night! She can help herself with bathroom stuff (hard to imagine last year she couldn’t even brush her own teeth!) and even contributes to household chores by folding laundry. It was really important to wake her up every day. Currently, we are building up her leg muscles to help her stand.

      Oh, someone in previous post said that she’s forgotten how to do simple tasks. You are totally right! I had to give her step-by-step instructions how to put on her T-shirt, how to sit up on the bed, etc. It has been a science. My mom never worked out in her life before so the concept of lifting weights, eating protein, beefing up was foreign to her. She had the concept that we need to leave her alone for her to rest. This meant I couldn’t tell her to work herself out. I have to watch her!

      She has poor short-term memory for the exercises. The neurologist said it’s not GBS but it might be due to the intubation if it was delayed. So, I have to tell her each exercise she’s doing. However, she has great memory when dad forgets to do something, she starts nagging him!

      Now I just work her out twice a day (for my sake, 3-4 is too much), 1-hour sessions each morning and afternoon. I make her do everything herself. Dad tells her to sit up during meals but still doesn’t work her out. Insurance company just OKed 3 PT visits, at once/week, but none after that. Haa…typical. If there was only one thing I wish is that she did the 1.5 months of inhouse rehab NOW, not back then. But I’m sure that would’ve been impossible – once she left the hospital, why would insurance pay for her to come back later (even though it would have been more bang for their buck).

      Anyways, these days I’m handling it the best I can. She takes mostly supplements (potassium, vitamin D, calcium, iron because she is anemic). Every few weeks she has bladder infection so we get her lots of cranberry juice, probiotics, keep her away from sweets, etc. It’s scary to think that she’s been on/off antibiotics since April last year. Sometimes I freak out because some of the strains have grown resistant. She has incontinence and from what I understand, dribbling during urination (versus strong healthy stream) is not enough to flush out bacteria hence she’s prone toward infection.

      She has some numbness/tingling in her leg but no pain. I lightly/firmly pat her legs all over, and she says it makes them feel better.

      As for me, I feel like I’m going insane, jumping all over the place. But I’m ok. In the beginning of April, I JUST happened to be starting my own company so the timing stinks. Oh well! So I acknowledge that I’m a special case. I’m a software developer primarily, but now I’m also half nurse/half PT and OT. I will be putting that on my resume in the future. =)

      Nowadays, in between exercising, meals, changing mom, servicing, answering phone calls, chores, etc. I still work. So, I want to punch all my friends that complain about their boss and small petty stuff. =D Money is running tight, but we’re so grateful that family members are chipping in. I keep thinking that I’m saving us money because I’m full-time caregiver.

      For anybody else in my situation, some advice: maintain some humor! You have to laugh or you’ll go crazy. Patience. Communication is SO IMPORTANT not just with the doctors, but with family members, and especially with the GBS survivor (I have to tell her everything I’m doing). Triage – figure out what’s important and what’s not so your can prioritize. Friends, are important if possible, but right now I don’t talk to many of them, just boyfriend. I have to be reintegrated back into society once mom is better, or else I will look for the friends that always complain about trivial stuff and REALLY punch ’em for being insensitive! Keep a SHORT journal so you can remember how you’ve progressed. It’s ok to cry and go crazy and be bitter. Keep your eyes on the “at leasts” in life. “At least….I don’t have to pay rent right now!” “At least….I have a father at age 65 who can still carry mom!”

      Thanks for reading. Just wanted to update.

    • Anonymous
      April 25, 2011 at 2:18 pm


      I’m just reading your post…..not sure how some posts seem to drop off the radar. Hopefully, my response is better late than never. 🙂 Your mom is truly lucky/blessed that you are doing the hard part; helping her work out physically. That’s much more important than money, bringing a dish, etc., (although those things are necessary too).

      You sound encouraged and not at all like an overworked caregiver, though I’m sure you can use some time for yourself. When others come to visit and just that, why not take a break for yourself? I’m sure you realize they may never realize the importance of OT or PT, so you may have to forego trying to explain that part.

      Keep up the good work and continue to stay in good spirits!!!

      Take care,


    • Anonymous
      April 27, 2011 at 10:20 pm

      Hi Leilani,

      I don’t have much time to go on the Forum, but can relate to every moment you describe, except I am the mom doing for the adult daughter. And trying to make a living. What state are you in? My reason for asking is that in CA there is In Home Supportive Services, but your mother/father would have to have NO assets. No $$ in bank, etc. Tough to qualify but my daughter had nothing. The State pays me for a little time. Please PM me and I will tell you what I’ve been doing. You can’t do forever what you are doing and it’s a forever thing. I check in on the Forum about once a week so if I don’t get back right away it’s cause I’ve not checked. You need physical help. The financial help is great, but you’re right THERE’S NO ONE WHO CAN APPRECIATE WHAT YOU ARE DOING. However, I may have some ideas for you.

      Carol ‘nicsmom’

    • Anonymous
      July 15, 2011 at 1:56 am

      Aww, thank you guys for responding! Every day I’m bombarded by something and am so tired I don’t check back here often.

      Tina, I’m so frazzled and high strung. People ask me a question, and I basically “vomit” up a lot of information. It’s extremely difficult. I try to be positive, but lately my fantasy has been wishing bad stuff on people. I guess it’s a coping mechanism!

      Nicsmom, thanks for the info! We are in CA, and unfortunately my parents don’t qualify. They don’t have a lot of $$ but they have an extra property that disqualifies them. We keep holding on because we keep thinking this is temporary, and we might be able to handle this for another year and things’ll get easier hopefully. Just, nothing else needs to go wrong, and that’s pretty strict.