Letting go a little

    • Anonymous
      March 25, 2007 at 1:08 pm

      Nate is 29 and is 15 mos out from GBS. He is just barely walking and still mostly in a wheelchair.
      Sometimes I want to go somewhere with my husband of less than 2 years but I feel apprehensive leaving nate by himself for too long.
      Nate thinks it will be ok.
      How do you know when its safe to leave someone? Am I responsible or is he?
      What kind of repercussions would I face if something happened while I was gone?
      I have phone numbers of our neighbors for him but it still scares me.
      Any help would be nice.
      Trudy, natesmom

    • Anonymous
      March 25, 2007 at 4:30 pm

      Hi Trudy,

      All caregivers are apprehensive about leaving their loved ones. I certainly was for the longest time. Caregivers need a break too and you cannot feel guilty about needing that break and actually doing something for yourself. You will burn yourself out if you don’t take care of your needs also. Get someone you trust with Nate’s life and have them stay with him so you and your husband can go out to dinner and enjoy each other’s company for the evening. You have to do this. I thought I could do it all taking care of Frank and having a full time job, guess what, I had a breakd down and it made Frank feel so guilty that his illness did that to me. After that I had my sons take care of him when I needed to get out and do something nice for myself.

      So be kind and gentle to yourself, you will not be of any help to Nate if you burn out. Believe me please. ๐Ÿ™‚ ๐Ÿ™‚

    • Anonymous
      March 25, 2007 at 6:13 pm

      Dear Natesmom

      Well, you are always probably going to worry because you are his Mum.

      Not being a caregiver, I do not have first hand experience but Brandy does so please take her words on board.

      I know I’ve used this scenario before but I think it is something to consider. If your good friend had a son aged 29 who had GBS 15 months ago – what would you advise or hope that she would do? Whatever you think that your friend ought to do, then do at least that for yourself.

      I don’t really think that you ought to plan to go out for one evening. Instead, it might be a better idea to plan to go out for more than one. Plan to go out regularly. It wouldn’t even be ‘me’ time – which you also need – it would ‘husband and wife’ time. That has its importance too.

      What does Nate think about it? I’d gamble and suspect that he might think it a good idea. If he does, make his day and do it. It’s fantastic when your parents actually listen and heed what you say. It could well help him too – to discover that he’s okay if you go out. It could build his confidence. It might even give him a little relief from a worried Mum.

      If you don’t look after yourself, your well-being and yes, your marriage, how can you continue being a great Mother?

      If your son is able to manage for himself for a while, with help from another if required, then not to allow him the chance to do so, dis-ables him. Give him the opportunity to be okay when you are not there.

      I am a believer in ‘gut’ feelings and it seems your gut is telling you to go out. Naturally, you are scared. So, as Brandy said, get someone you trust (someone your gut trusts) and go out with the man you married less than a year before your son got GBS and celebrate the fact that you have come so far. And, if the first time out seems strange, weird and not particularly great – accept that it wasn’t great and plan a second outing. Rather like sex and fine wine, the first time can be a disappointment but it gets better with practice.

      God bless

    • Anonymous
      March 25, 2007 at 10:27 pm

      I was in the hospital for 3 months, & then came home, not walking at all, barely able to transfer from a wheelchair to a bed (with a sliding board), or on & off of the commode, little use of my hands, etc. My mother did come to live with us for 9 months, but went home on weekends. When she moved back home I was no better, it was only because my youngest had graduated from college & was now working afternoons, whereas my husband worked days, that I could be alone downstairs.

      Theroetically it worked because I was never alone in the house, but realistically my son slept until at least noon, made me a sandwich & went back to bed! But limited as I was, I could dial a phone by then, use a remote control (we had a huge one for me), & control a mouse. I felt like I had been freed from prison! I love my mother dearly & to this day appreciate all that she did for me, but how terrible it was to have to watch Regis & the View every morning, then her old WWII movies the rest of the day. How I savored my piece & quiet. I bet I was in worse shape than your son is in now, so I am sure he could handle it, would probably love it after all of this time.

      I would recommend that you keep a cell phone on you, or that he wears one himself. That is what I did when I was alone, wore a cell phone in a leather case on a strap around my neck; just in case of a fall. Then leave a few phone numbers he could call if he fell, although 911 would probably what he would be calling if he fell. Then quit worrying & let him (& yourselves enjoy.) Oh how you all deserve it! He does not want to be a burden to you at his age.

    • Anonymous
      March 25, 2007 at 11:41 pm

      Hello Trudy,
      Another thing you could do because a phone/cell might not be in Nates reach, is to get a MEDICAL ALERT, which Nate would wear around his neck or as a bracelet. Push a button and as long as Nate can respond, family/neighbor will come first and if he can’t answer, 911 will be sent. If you’ve fallen, it’s easier to push the button of the medical alert then look for the button on the phone. The medical alert will also give you all a sense of security.

    • Anonymous
      March 26, 2007 at 1:35 am

      We went to the fishing show today without Nate. He told us to go and he would be ok, so we did.
      I called him a couple of times and he was just fine. He can’t be up sitting that long anyway.
      He keeps his cell phone right next to him always. He had our neighbors on both sides phone numbers as well as some others in case he needed them.
      He fed the dogs, took them out to go potty, made himself a microwave tv dinner, watched tv, did some computer stuff and I think he had fun without us there. He says he was bored though but thats not uncommon.
      I feel better having gone and he probably does too. Its just hard for me not to worry about him.
      I really appreciate all the kind words and advice. It really helps a lot, especially from those who have been where I am.
      I know its going to be hard going thru all the stages we have ahead of us but we will have to go thru them to get nate’s life and our own back, whatever that turns out to be.
      I really appreciate this board and all the help I have gotten.
      Trudy, natesmom

    • Anonymous
      March 26, 2007 at 11:23 am

      Hi Trudy,

      So happy that you and hubby got out by yourselves. It will get easier everytime you decide that you and hubby need a night out. ๐Ÿ™‚ ๐Ÿ™‚

    • Anonymous
      March 26, 2007 at 12:40 pm

      dear natesmom,

      please remember that as a care giver you need [B]you[B] time as well and also consider that perhaps nate needs some nate time as well so never feel bad when you need to get out for a while since if you spend every moment worrying about nate you may end up not living your own life and that would be tragic.

      best of luck,

    • Anonymous
      March 26, 2007 at 2:33 pm

      Life Alert is a great idea. He will wear it around his neck and if he “falls and can’t get up” he can call and the ambulance and police will come. Can get at any Med supply company(like where you get wheelchairs). Well worth everybody’s piece of mind and you can have more freedom. I’m sure he would appreciate alone time also. Dr. Shawn

    • Anonymous
      March 26, 2007 at 8:31 pm

      Trudy –

      I am about the same age as Nate & I can tell you that I am POSITIVE that he enjoyed his time alone.

      Go out and have some fun for yourself every once in a while. I know it worries you to leave him alone but I’m sure that it’s good for him. I bet that it makes him feel a little more independant. And it’s good for you too. I’m sure it recharged your batteries to go out for awhile.

      He’ll be ok. He knows how to get ahold of people who are close by if he needs help. It sounds like he had a good time there by himself.

      Maybe you could make a date night once a month (to begin with) with your husband. You could go catch a movie or go to dinner. Maybe even just take a long walk.


    • Anonymous
      March 27, 2007 at 6:28 am

      Trudy, Glad to hear you and hubby had a good night out. Nate most likely enjoyed his time alone too. I know its hard as a mother to let go and not be there. But know as much as we do for our children they also need their independence. I beleive it probably made Nate feel good knowing he could get by on his own for a few hours. Hang in there and try to do something for yourself every once in awhile. It will help you and Nate in the long run. ๐Ÿ˜€

    • Anonymous
      March 28, 2007 at 4:39 am

      I was lucky to have only been incapcitated for a fairly short time by GBS standards, but I can remember how satisfying it was to begin to do things for myself like brushing my teeth, having a shower etc. I honestly didnt worry about having to have people do things for me, but i got such a buzz out of accomplishing things again. Prior to getting GBS i would have thought I would have been devastated if someone told me i would have to use a walker, but the day i first took those few steps by myself i was so proud, i didnt care if i had to use a walker for the rest of my life (turned out to be only a couple of weeks)

      I think Nate is doing brilliantly and he probably does too. If he is doing things like looking after the dogs, he is doing more than just coping … he is trying to do the day to day things we all take for granted. Dont underestimate the boost to his self esteem from seemingly simple tasks.

      like everyone has said, you need and deserve some time to yourself and i am sure it is probably doing Nate the world of good too. i am sure Nate wouldnt take on more than he could handle and if he thinks he is up to it, he probably is.

    • Anonymous
      March 28, 2007 at 10:19 am

      Congrats to you, Trudy ๐Ÿ™‚ That was a huge step for you to take! Don’t stop now. This is good “medicine” for both you and Nate. Tell your “new husband” that I so appreciate how he has supported you and Nate thru out this experience.

      My Rx is a “regular date nite” so that all of you can anticipate a special time each week. Nate will surprise you with the improvements he makes while learning to go it on his own. Testing his wings will only improve his abilities. Cheers to all of you!

    • Anonymous
      March 28, 2007 at 1:08 pm

      Trudy, Big Hugs to you and your hubby. i think its great you 2 got out on your own. i know Nate enjoyed the freedom also. in my opinion i think you need to go out at least 2 nights aweek, well maybe 1 night and 1 day. you need your time away from the house, appts, Nate, and the worries. your health is very important also. and your marriage needs the time and energy as well. i enjoy it when my kids are in school and my hubby is at work. thank goodness they are gone at the same time. it helps in many ways, of course, i use to get phone calls all the time, check up calls i should say. i liked getting them right after i got out of the hospital, but then when they interferred i put the kabosh on them. now i just have my parents calling me to see if i want to go out for our walks.:) the freedom is what really kicked me in the butt to get better and more independant faster. of course since i have had soo many relapses i’m getting alot of practice at it.:D you know of course Nate will always love and appreciate you for all that you are doing for him, and he knows you need your time also. keep up the positive thinking. take care.

    • Anonymous
      March 28, 2007 at 2:31 pm

      Nate told me that him and his younger brother Ben are going to their friends house saturday, then stay at a Motel 6 that night. It’s 100 miles away.
      The next day they are going to their friends house again to watch WrestleMania. LOL
      Their friends house has 3 very short long steps next to the driveway to get in the front door so it will work for Nate’s chair.
      Nate made the reservation for Motel 6 and specified that he get a downstairs room since no handicapped rooms were available yet. They’re being remodeled.
      His Bro will take good care of him, I know that. He is very hands on if he needs to be with Nate. He has always been the type that just jumps in there and does what needs to be done so I’m not worried about that part.
      I know I will be a little worried but I think everything will be ok.
      I am going to take the advice about going out once or even twice a week with my hubby and spending some quality time together.
      He is very good about making sure Nate has everything he needs and all of us really appreciate that.
      I’ve been talking to nate lately about him try new things to see if he can do them. Now that he found out he can get out of a low car and stand, I think he is ready. He agrees. We’ll see how it goes.

    • Anonymous
      March 28, 2007 at 4:05 pm

      Yea Nate! You go guy ๐Ÿ˜€ ๐Ÿ˜€ ๐Ÿ˜€

    • Anonymous
      March 28, 2007 at 8:41 pm

      Trudy, take advantage of your “you” time and I hope you do. It’s so nice to hear about Nate getting out and doing some independent things. You guys are in my prayers.


    • Anonymous
      March 28, 2007 at 9:42 pm


      That’s wonderful news about Nate’s trip. ๐Ÿ™‚


    • Anonymous
      March 31, 2007 at 1:28 am

      ditto re nates trip … sounds like he has it all planned. Good on him for getting out there. And good on you for taking some time out.

    • Anonymous
      March 31, 2007 at 1:00 pm

      Hi Trudy,

      Seems like Nate is taking steps to become somewhat independant, that’s a good thing. He needs his freedom as much as you and hubby do. This is a good thing. Hugs to Nate.

    • Anonymous
      March 31, 2007 at 11:21 pm

      Nate has been in PT steady since 2 mos ago and not much was happening until about a week ago. All of a sudden his lower legs are starting to change shape and get stronger. His therapist noticed and so did I last time he was there.
      I think it took nate by surprise though.
      He is very sore every time we go now and that is also new. He was not sore before. I think it may be because he was not getting any real muscle action until now.
      His feet are still numb though, making it a little hard to walk and he still does not have his AFO.
      He will be getting fitted with it next thursday morning at 9a.m., then off to PT at 10:00.
      We are both anxious and so is his therapist to see how he does walking with it.
      His brother and I have both been talking to him about trying new things lately.
      He shaved standing up the other day. That was new.
      He just leaned into the counter and held the wall grab bar I put next to the shower. He stood for about 5 minutes doing that.
      He is also trying other low sitting things now and able to get up again using grab bars that clamp on the tub, and the bathroom counter.
      These might be little things to some, but not for him. They are great feats.
      I’m so happy to see him getting past obstacles now. Its also making him feel good to be able to do closer to normal things now, even if they’re small.
      As far as him taking the trip with his bro Ben, I thought I would be nervous but I’m not. I feel good about it.
      My husband and I went to a drive thru nursery to buy flowers, then we went to Home Depot, then we went out and got some dinner. It was really nice.
      Trudy, Natesmom

    • Anonymous
      March 31, 2007 at 11:44 pm

      You Go Nate!!! keep up the Great news!!!
      trudy-those aren’t just little new things, they are HUGE new things!! especially to those of us who were there at one time or another.:) i’m alittle jealous of nate, i still can’t stand up to shave(my legs that is!!!!;) ).
      i can’t wait to hear about his trip! and your next adventure. a drive thru nursery? only in california!;)