Had a tough Saturday

    • Anonymous
      August 6, 2007 at 9:03 am

      Well, my BIL and SIL are here from the UK to help, so on saturday I sent them out into NYC to take soem time off and I stayed home with dad. well with them he is fine, but with me he will act like a big baby!
      It was such a tough day, I would ask him to help me help him move and he wouldnt, he can do it, but he wouldnt do it. He just wanted to lie down all day! he would do his excercises with me or anything!
      We went to the bathroom and he can switch from his chair to the cammode, but he would do it! he was just flopping around! it was so tough.
      I have to learn more patience, he starts cursing and made his wife my MIL cry when he cursed at her!
      I had to use eveyr trick in the book to keep him in the chair and sitting up and not want to lie down. It was a tough day, family is leaving the end of this month, I am so nervous and scared about what we will do then.
      Sunday, he was the same, but less moody.
      this morning he was good, he had a good rest and he was better.

    • Anonymous
      August 6, 2007 at 3:06 pm

      I am glad you are getting help from your family. It is sad that you are having a bad time with your Dad. I know you have to be frustrated. The fact that this does not get better over night or in the matter of a few weeks or months is going to be hard for everyone! Best thing to do is to get on a routine for everyone. Try to stick to it as closely as you can so that your Dad can get plenty of rest IN BED that is when the nerves are able to heal. Being horizontal and long periods of sleep…..not just a nap. As far as him being a baby….he is fragile right now and the damage to the body is keeping him back from his life. Think of what that is doing to his pride, self esteem and how frustrated he has to be. Your frustrated too but his body is not letting him do what he wants too do or thinks he is able of doing. All his priviledges have been taken away like a child. You have to give him some benefit of the doubt and keep possitive. Give him space. Give him time to REST. The fatigue that comes with these illnesses are hard to put into words but maybe telling you my time frame when I first come home will help. I needed to sleep 20 hours out of 24. Not a cat nap…..deep sleep……and then I would wake up and be so tired I struggled to hold my head up because my neck ached and my whole body was sore. My jaw would ache in the middle of a meal, I would stop to rest and my food would get cold. My arms would feel like wet noodles from trying to hold the spoon or sippy cup by both handles and every movement was an effort. A trip to the bathroom was all I could handle and I would have to forget about getting a glass of water for my dry mouth. I felt like I could not get back to bed or the couch. To explain how I felt was exhausting. I could not watch tv or read….I just did not even have the stamina to sit in a chair that long to enjoy a meal or company. Put yourself in his shoes. It is an effort to carry on a conversation….it is hard to get thought together so you get frustrated. HE IS AFRAID this is the end and scared this is the way he is going to be for the rest of his life. It is alot on his mind right now and he is trying to get used to it. Trying to fight with his illness, NOT YOU! After doing exercises I was exhaused….if they gave me too much to do at once I collapsed. I did not want to do that because it kept me in the hospital longer and when at home they had to come to my house and having visitors come several times a day was just too much for my system to handle. Plus the phone calls! Talk to him and your Mother and see if they can come up with a schedule that is good for them. Especially your Dad. If he wants to sleep until after breakfast….make him something when your Mom and you have something and heat it up when he is ready. Breakfast and getting cleaned up might be all he can handle before he has to go back to bed. He might be able to do some exercises before lunch and after lunch go back to bed. He might sleep all afternoon and just eat and watch the news and be ready to go back to bed. You might have to get his exercises in for five minutes each hour to get them all done. That way he can pace himself and will not get tired out. Keep trying to see what works for him. Be patient, walk away if you get frustrated and hang in there. WE need our caregivers but you also have to take time to take care of yourself. Remember to ask for help. Let your Mom do what she can for him also. Don’t take over he jobs. That is what they are comfortable with and try to not change their lives or they will put up a battle! With age comes stubbornness! 😮 Don’t forget to give your parents a hug, sometimes that is what they need the most! 🙂

    • Anonymous
      August 6, 2007 at 9:29 pm

      I know you had a rough weekend, but it’s probably his way of saying he loves you best. Ben, my fiancee’s, father is the same way. He only gets whiney around the people he loves and trusts most.

      Good luck!


    • Anonymous
      August 7, 2007 at 1:13 am

      I’m sorry you are experiencing some minor difficulties with your F I L. I hope you have alittle more respect for him then to tell him how you see he is Acting like. He might be able to do one thing one day and not be able to do the same thing the next day. Please keep that in mind. There are no rules to the recovery process, don’t expect him to do things the same way day after day-it doesn’t happen that way. You have to have a Ton Of Patience with a gbs person, if You can’t handle that then you shouldn’t be with your F I L. Think of his body like its a dead battery in your car, you just drove it the day before and it was fine. You go out the next day to drive it and low and behold the battery is dead, the car can’t run on a dead battery. The human body can’t move correctly without the nerves working. You get your car’s battery jumped and now you can drive it for a short time until you turn it off for a couple hours. Later you go to start the car and the battery only has a small amount of juice left in it, but not strong enough to start the car. You can keep going through the hassle of jump starting the battery and not knowing when and if it will die or if it will start the car, or you can replace it with hopefully a better battery that will start the car everytime. The gbs person doesn’t have the option of buying a new battery, we have to take our chances with what we have in us. Sometimes it is just barely enough energy to work a few things for a very short time and at other times its enough energy to get us through the day. We never know until it comes to the point of usage. Your F I L might be going through the stages of this syndrome, the depression, acceptance, etc. Its a normal reaction to this life altering syndrome. Those around him need to keep the atmosphere a positive one, negativity can cause more problems for him. Please keep your attitude a positive one. Maybe he might benefit from having home nurse visits along with home pt visits. It might help the family situation at the same time. Family support plays a major role in recovery for the gbs patient. Take care.

    • Anonymous
      August 7, 2007 at 10:28 am

      Thanks for all your encouragment and insight.
      I do step away from him when I am frustrated, and I know it is very tough for him and he is trying so, so hard. I am jsut venting i guess.

      He has home health aids coming in and the therapists too. I think saturday and sunday were just slow days for him and then yesterday (monday) he was great, he even stood up for about 5 seconds and he did it about 10 times! then we went to the dr. and they decided to keep the cathatar in since he has enough to worry about, then wether to pee or not!
      He does say he wants to rest all the time, we try to motivate him to stay awake and sit up. But I guess that is part of the syndrome, to rest and let the body heal, so I might emphasise that more.

    • Anonymous
      August 8, 2007 at 8:02 am

      I understand why you might want to see him awake, sitting up, and acting more “normal,” but the fact of the matter is that the best thing he could be doing right now is resting, resting, resting. That is the only way his nerves are going to heal. Pushing him to expend energy he doesn’t have and to keeping sitting up, talking, interacting, etc. when he is already fatigued can actually set him back even further and make recovery time longer and harder. Let him sleep and rest as much as he can; that’s the most important thing he needs right now.

      If I pace myself and rest sufficiently, I usually have enough energy to make it through the day most of the time. But if I overdo it, it can take me days of sleeping and lying on the couch to recover enough to function semi-normally again. I have trouble walking, get short of breath, face droops, no energy, etc. until I rest enough for my nerves to recover. But if I rest enough every day and am careful not to push myself, I appear well enough that hardly anyone would know there’s anything wrong with me. It’s a delicate balancing act, to be sure.

      Please try to be patient with him. I know this is hard on all of you, and I appreciate all that you are doing for him and how much you want him to be well. This condition tests all of our patience! Just hang in there, don’t push him, and try not to make him feel bad for being tired. His fatigue is merely his body’s way of telling him he needs to put all of his energy into healing his nerves, not sitting up and be sociable.

      Best wishes to you!